About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Tuesday, April 10, 2018

Off to the Children's Museum- Day 2

If you are ever in Indianapolis the Children's museum is a place that is not to be missed.  While I have heard from some family members that they have gone without children, I am not sure I would say it is THAT incredible, but it is definitely one of the best Children's museums I have ever seen!

 

Before we even started in the actual museum we checked out their new sports museum section.  For Matthew and Jacob this meant over an hour of basketball statistics, basketball shooting, and seeing some incredible basketball paraphernalia.  For David and me it meant looking at the nascar and Indy 500 cars and checking out all of the other cool sports information that had been gathered and was on display in this section of the museum.

One of the best parts of this section was that they had a place where you could try your hand at being on the "pit crew" for a race car.  While we had a blast taking off the tires, filling the gas and putting the tires back on, and trying to race the clock, my favorite part was truly watching dads and their preschoolers trying to do this together.  The clock showed the best time of the day- under 10 seconds......however, this does not show that these tasks were done RIGHT in 10 seconds, or done WELL in 10 seconds, it just shows that they were done in 10 seconds.  It was awesome to watch a group of dads get their testosterone in a bother as they tried to help their little one beat the 10 second top time of the day.  (spoiler alert.....it wasn't possible!)

After our time in the sports section we were off to check out the dinosaur exhibit.  This was an incredibly well done exhibit. They mixed dinosaur models with hands on dinosaur digs, and scientists who were there to meet and talk to the kids.  We met a museum staff member who was from East Greenbush, NY who was cleaning an actual dinosaur bone.
I am not sure who was more intrigued by this, Jacob or me!  Truly he and I stood there for over a half an hour and must have asked 6 times whether it was a REAL dinosaur bone or just a fake one!  The scientist pretended each time not to be annoyed by our question, but after we asked 6 times I got the hint that it was time to keep on moving!

After the dinosaurs, it was off to check out the second floor of the museum!  I could not believe it was past 12:30 and we only had 4 hours to finish 3 more floors of the museum~!!!

One of my favorite parts of the museum was they had a section that was devoted to children who made changes in the world.  The section included Anne Frank, Ruby Bridges and one of my favorite children heroes ever, Ryan White.  You might remember that Ryan White was a young teenager with Hemophelia who was diagnosed with HIV in the late 80's. 

His story always touched my heart and so to see his story in this museum was very  powerful to me.  The boys went off to check out the race car exhibit which was next door while I took a some time reading through Ryan White's story, seeing the items of his that are showcased in the museum and just going back to that time in our history when a teenager having HIV was the major news.  In some ways that seems like such a powerful contrast to our teenagers today.  Today, teens are so accepting of bisexual, transgendered and openly gay peers at least in the North East, and yet there are still school shootings which are occurring on an almost daily basis across the US.  We have come so far, and yet we have so far to go.

We finished the museum on the 4th floor where Matthew fell in love with the exhibit on China!

David found his favorite spot also on the 4th floor, the water table.  There is something simply peaceful and relaxing about playing in a humongous table of water.  As you build the barrier, then open it and the water rushes down.....it was such an incredibly peaceful way to play.  After a busy day at a museum, for David the water table was the perfect ending!

As the museum was closing, we headed back one more time to see the sports exhibit.  I decided I had to try my hand at a basketball shoot out with the boys.  I am pretty sure I made the day of one of the dad's when I beat Jacob by 6 points and hooted and hollered with excitement.  (winning with grace is a skill I am still working on).

We ended our day back at the hotel once again hanging out and enjoying some pool time.  Matthew decided he was "too cool for the pool" and instead hung out in the lobby.  Only Matthew could make friends with a guy who lived at the hotel.  He of course got the entire story of this man's life.....the man was living at the hotel for 2 years while he was working in town.  Matthew has decided that this sounds like the perfect life....in all honesty, it sounds pretty ok to me too. This hotel included a hot breakfast daily, AND a free cocktail hour each night.....AND someone else cleaned the room each day.  ( remind me why we came home again???????)

Jacob convinced me that we had to carry on our nightly tradition of Steak and Shake milkshakes so in the pouring rain I went out for milkshakes for the boys.  It became a fabulous way to end our nights, hitting the pool, milkshakes all around and then falling asleep excited for the adventure of the next day!




  

Sunday, April 8, 2018

Indianapolis......for vacation?

This past week was spring break and our family was headed to Indianapolis.  We had plane tickets that had to be used, and so I gave the boys the chance to pick a place that they wanted to go and then started looking for a flight to get us there that didn't cost any more than the plane tickets.  Jacob was born in Indiana and felt strongly that he needed to go back to see Indiana.  It sounded like a perfect adventure, tickets were purchased and we were off!

On our itinerary were the State Museum, Children's Museum, NCAA museum, The Indy 500 track and Museum and the Zoo.  As we were flying into Indiana and we were asking for advice for other places to see or things to do, all people kept saying was "you came to Indiana?  For vacation????"  The more people said this, the more nervous I got, but I have to tell you, they couldn't be more wrong!  We had a phenomenal 5 days!

Our first day started a little rocky.  In my mind vacation is about resting and relaxing, so we didn't get moving until 10:30.  We headed out of the hotel and hit up the State Museum.  Based on the website, I assumed this would be a full day trip, but figured, in case it wasn't we would hit up the zoo or the NCAA museum if we finished early.  Unfortunately, life in Indiana is a little slower paced than in upstate NY.  While we loved the State Museum, it only took us 3.5 hours to get through and so we headed out looking for an option for our afternoon.

The NCAA museum is closed on Mondays.... the zoo closed at 4:00 and it was already 2:30......what had been a great start to day 1 was quickly becoming rounds of "this is supposed to be fun mom", " now what are we going to do mom?" and so I had to find a quick solution......new city......my idea.....let's go for a drive and see where life takes us!

Thankfully, in downtown Indianapolis there are tons of major sports teams.  We drove by the Colts stadium,  the Packers Arena and stopped in to see the Indianapolis Indians stadium.  I am not a major sports fan, but seeing a stadium is a pretty cool deal!  I think I was likely way more excited than the boys!

As we then wandered through Downtown Indy, we realized life closes there around 4:30.  While looking for the State house, we accidentally wandered into the court house ( one is located at 200 WEST Washington Stand the other is located at 200 EAST Washington St.  I am certain I cannot be the only one to make THAT error!

In talking to one of the security guards I realized that during Jacob's adoption proceedings the judge had been on the phone with me from the very building we were now standing in.  In Indiana the adoptive family does not have to come back to Indiana to finalize the adoption.  Given the challenges of bringing 3 young children to Indianapolis for a 10 minute court proceeding, at the time I had decided to simply attend by phone.  Now, suddenly 11 years later to find myself in the court house where Jacob had become a permanent part of my family brought up a lump in my throat. After taking in a moment to breathe in the complex emotions I was feeling, we wandered back outside and headed for 200 West Washington Street to try to get a tour of the State house.  Of course, that had now closed as well, but on our walk we stumbled upon the Observatory which is located inside the Soldiers and Sailors Monument.  While the observatory was closed, the boys loved climbing around on the monument with a group of kids and I was able to mentally add the State house and the Observatory to our list of "to do" activities for the week,  and take a moment enjoying downtown Indianapolis!

We also walked through some pretty cool shops, a comic book store with an awesome salesman with self proclaimed ADHD who kept the boys busy for almost an hour, and a store called Soda Fizz which was awesome to see!

Finally, we decided no first day in Indianapolis was done without a milkshake from Steaks and Shakes, so with amazing milkshakes in hand, we headed back to our hotel calling Day 1 a success!  The boys finished the day with a swim in the pool (or for David the hot tub), I used the chance to check out the hotel workout room, and then we took some time planning out day 2 in Indianapolis!

Wednesday, February 7, 2018

Passion

I can likely best be described as a passionate person.  This has served me well- I work with passion for the children in my program.  I parent my boys with passion, and I passionately stand behind those who work with me as teachers in my program and who are my friends.  Unfortunately, this is also the personality trait that also works so strongly against me much of the time.  I am passionate when I am trying to get the special education department to understand a need that I see as important for  of my boys.  I am passionate about helping the children who are in my school and I am passionate about ensuring that my boys are the best they can be.

This morning is a snow day and my plan was to wake up and enjoy a calm day filled with board games and 1:1 time with each of my boys.  Unfortunately there was also a pile of laundry that needed to be put away, Matthew decided he needed to make pancakes and David decided that he should eat yogurt ALL OVER THE COUCH!!!!  What started as a slow, easy going morning became a morning of chaos and craziness.

I asked the boys to please put away laundry and I asked Jacob to please throw away the garbage in his room.  This was quickly met with grumbles, complaints and overall anger on his part.  While I ignored and ignored and ignored, there is a point in time where one simply cannot ignore a child's grumbling and I responded with passion!  Not a passion I am proud of but more a passion that made it clear that he needed to stop complaining and start working.  Unfortunately my passionate request that he stop complaining and start working was quickly met with his own passionate desire to create a stand off.  I have never in my life seen a child "work" for an hour and accomplish SO little!  I swear I could still not even enter his room after an hour, and the grocery bag he was using for garbage was less than half full.

As I walked downstairs, hoping to give Jacob some time to restart, I saw a couch covered in yogurt.I am ready for a new couch but buying a new couch is pointless.  David starts every morning with a buffet all over my couch- yogurt, cereal, bagels, frozen waffles.....all over the couch!  I can set him up with a bowl of cereal and milk in the kitchen and he will bring it into the family room and eat it and spill it ALL OVER MY COUCH!  I know what you will say, watch him, supervise him...but honestly as a single mom I can get up at 5 AM and those days he will sleep until 7, or I can get up at 7 and those days he is up at 5 AM. He is silent as he sneaks downstairs and starts his buffet all over my couch.

What he wants is a tv set in the kitchen, but that is just something I am unwilling to give into.  I have added the SPECTRUM cable app to his ipad so he has access to all of his tv shows and can watch them in the kitchen but apparently that is not enough for him.  I dont know what else to do to solve this problem, short of putting a tv in the kitchen and that is simply something I am unwilling to do.

As for Matthew, he cooked pancakes this morning.  This is something he is very good at, but unfortunately also is not great at cleaning up from.  Apparently an egg cracked on the kitchen floor and I walked through it, and the griddle is covered in egg and pancake residue and while he is now recleaning it.....well, just yuck.

I kind of want a snow day redo, and I do totally know that these problems too will pass, and I will become less passionate or this passion will serve the boys and I well as they recognize that they have to be responsible for cleaning and putting things away and caring for themselves, but today the passion seems a little over the top and bonkers as I try to teach 3 boys how to be their best selves.

Monday, December 18, 2017

The whole child

All of us are made up of many parts, personalities and things that make us special.  I'm a hard worker, with high expectations of others who can be over the top silly with kids, but also can be seen as "too demanding" by coworkers.

Matthew is sweet natured with a huge heart and a special ability to connect to people.  This charms grown ups but is seen as weird or intrusive by same age peers.

David is quiet, focused, and gentle.  He can also be the Tasmanian Devil prone to clear a whole room in a spin of chaos,

Jacob is creative, spunky, high energy with an intense personality who seems standoffish.  He cares for little kids with true love and concern but his impulsive nature at times leads to high risk fun.

For Jacob and David more than Matthew you have to get through their outer shell to find their awesome inner selves.  Currently Jacob needs an adult to bang down his tough outer tough core so that he can share his inner sweet side.  Jacob is a true sour patch kid- his initial sour pushes away some,but if you stick around you get to meet the true sweet, kind Jacob.

This year I have been looking for a sport for Jacob where he is part of a team. Jacob's true love is football but two years go he was told he couldn't play tackle while we monitored a newly diagnosed heart condition. I truly believe that his passion for football is due in apart to his love for the game but also due to his love of his coach.  With practice 3 times a week his football coach got to see Jacob asa kid with heart and passion.  He understood what made Jacob tick and encouraged him to play football with true heart.

Once Jacob was unable to play football we went looking for another sport he may love.  He tried out for the baseball team, but he was put on the team a league lower than his same aged peers.   He didn't make the travel team for basketball where we live.  He had little prior basketball knowledge so this wasn't a huge surprise, but his disappointment was real.  We then tried out for a private basketball team and he was cut because he was the last child to sign up.

Now he is playing on our recreational basketball team but even there he sees that he us not the child to move the ball up the court.  His job is to get the ball to the better players.

I'm concerned about all of this and what is happening to Jacob's self esteem.  He needs to find something that he thrives at and I truly believe that this "thing" will include an adult who takes him under his wing.

Thankfully Jacob has the "ok" to hopefully play football again next year.  I am really hoping that this means he will have a chance to be coached and supported by a coach who sees Jacob inner awesome. That said, football isn't until summer and I really think Jacob needs something/someone who can see that his energy, while crazy making, is also what makes him special.

He needs someone to knock hard on his outer shell, until Jacob lets them in and then helps Jacob shine.  He needs that person who sees the gold nugget that I see in Jacob.  He needs someone who can teach him that letting his guard down is safe and will lead to good things.

What do you see for each boys future?


What do you see for each boys future?



That is the question I was asked ....I realized that I have accepted reality for Matthew.  He will have a part time job at least.  He will live with peers and someone to oversee his finances, decision making and general whereabouts.  He will have some independence coupled with supervision and oversight to keep him safe.


For David I have also accepted his reality.  He will likely need a mentor or coach with him if he is to work independently even part time, so likely he will participate in a day program "without walls" that lets him be part of the community.  He will likely also live with peerBut will require a live in support person or he will live with me.  David is more at peace than Matthew is at being home, and I think he might enjoy living here long term.  I would certainly like that.

Unfortunately the question was asked about Jacob and I haven't accepted his reality yet.  Truly, I feel like my parenting dreams died with Jacob.  Up until 2nd grade we lived on the edge of typical.  There were friends, play dates, activities, birthday parties.  He was on the football team and fit in.  He was happy and while I had ruled out him. Beinga Rhodes scholar, I still saw college a job, wife and kids. I saw me as a grandma and him being able to keep a protective eye on his brothers as needed.

I don't know what happened.  I may never know what happened but Jacob stagnated.  His peers moved forwards and he froze in time and now I fear he is even losing ground.  There are so many basic concepts Jacob doesn't know; the order of the days of the week, early vs late, placement of his elbow vs his knee.....the list goes on and on.

Sadly, Jacob knows that he is different and he is mad about it.  He hates being different.  He hates that he doesn't know some things.  He hates going to a BOCES class and leaving his friends from the school he spent k-4th grade at.

Worse, I'm mad.  I'm lost.  I'm hurting.  And there is no one to talk to.  No one truly understands this anger and pain I feel.  Lightening feels like it struck 3 times.

The lightening was great,  I got the gift of the boys.  But the lightening brought darkness with their challenges.

They are kind hearted, gentle boys who can be equally filled with anger and rage.

I fear that I am the cause of their struggles.  I fear that my lack of patience did this.  That I created their struggles by not singing enough, reading enough, by being too focused on work.

What if I only had adopted Matthew and could have given him all of my energy?
What if I took maternity leave with each of them and spent 3 months doing nothing but bonding?
What signs did I miss with Jacob?  How does a preschool director not know that her son doesn't know where his elbow is!  That's like preschool 101!  What's wrong with me?

This whole year I am sending Jacob to school with the hope that if he us "good enough" and I advocate enough that he can come back to our district programmin, this  nightmare will end and my dreams for him can continue.  Instead, I'm realizing that this nightmare is likely to continue.  As his peers are moving forward he is standing still.  We are finding tools and techniques to guide him and he now can do basic addition, but still struggles with subtraction.  His peers are on long division!  We are past the point of catching up.  I'm not sure which if us us more upset.

As I get down on life I feel our ship sinking.  Because I am a single mom there are no life supports.  When the ship is sinking and I'm depressed over all that is on my plate there is no safety net,  in public I out on my smile and fake my way through, but the boys know the real me.  The me who is irrationally angry over yogurt all over the couch, 4 brownies a boy ate for breakfast and the same questions over and over and over again until my head may just explode!

Friday, July 28, 2017

Groundhog Day

Tonight and many nights this week our night ended with sadness. There are some things that I simply cannot fix and I am working hard to remember that as a parent I have limitations.

Matthew is obsessed with driving. Unfortunately, I personally do not see this as a reality.  Even if he could truly operate the car in the best scenario, I don't see him being able to handle an emergency or a challenging situation like driving in a rain storm or merging on the highway.  This is something I cannot get Matthew to understand.  You see in his mind he drives a golf cart, and he drives the cars at the amusement park and so he should be able to drive a car.

He is talking about driving to anyone he is near and he is getting tons of reassurance that "of course you can drive, maybe not yet, but you can drive one day soon."  He has studied the test for a learner's permit more than any other 16 year old I can imagine.  Hours and hours have been spent by Matthew on the DMV home page, and looking over the questions, but no matter how he may be able to study and learn the answers to those questions, I just don't see how he can make the judgement calls in the tough situations for me to put him behind the wheel of a car.

In addition to all of these concerns, I have to be realistic and realize that Matthew is turning into a young black man.  It is a huge fear for me that he would be out driving one day and be pulled over for something stupid like failure to signal.   Matthew might respond to being pulled over inappropriately and things could end very, very badly.  Matthew does not look or sound disabled when you first meet him.  It takes a few minutes of conversation to determine that something might be limited about Matthew, but in the heat of the moment there is not always time for these conversations, and so I have to protect Matthew, and this means right now I have to protect Matthew from something he really, really wants.

Every night we are having the same conversation.  Every night he tells me he is ok with not driving at 16 as long as he can drive at 17.  And then he asks over and over again if he can drive at 17 and I have to tell him no, he won't drive at 17 either.  He then has to tell me that at 18 he can move out and get his permit and his license and then he goes through why he doesn't want to take the bus. He doesn't want to just sit in something that moves, he wants to have control of the moving vehicle.

Tonight we again had this conversation, and then he left the kitchen and went to his bedroom sobbing.  He is broken-hearted over not driving and more than that he shared he just wants a friend.  He is lonely beyond words.

The kids in the neighborhood are overwhelmed by him now that he is texting and communicating non stop with them on instagram.  What was at one time him hanging out for a little while, every few weeks, is now him texting and messaging them almost daily.  It is exhausting as it is the same texts every day.  Over and over again.  It is his way of trying to connect.  For him it is comfort, for them it is exhausting.

I have tried to involve him in Special Olympics, but he doesn't see himself as the same as the athletes we have met at Special Olympics.  I have tried to involve him in typical sports, but it quickly becomes apparent that he doesn't fit into a typical sports team.  He doesn't process the rules of the game quickly enough to make decisions and fit into the team.  His repetitive conversations are exhausting game after game.

He is somewhat successful when he is at the YMCA playing pick up games in the gym, but that is dependent on there being a game going on, and that he is needed as a player.  Additionally, there are times when the kids playing in the gym are the same ones who are tired of him from the neighborhood and so it is just another rejection.

I am going to spend time tonight and this weekend trying to figure out how Matthew can find peers to be with.  I keep telling myself that there has to be a place for kids like Matthew, other kids who simply want a friend.  Kids who are entertained by the same repetitive conversations.  Who are also limited in the opportunities they can participate in but who are fun to be with, and have gentle hearts.  Kids who love a great game of basketball or just shooting hoops.  Kids who love making music, and spending time together.  Kids who love tossing around a baseball.

Matthew is looking for a friend, and a friend needs to be a true peer.  I need a friend for Matthew because if I have to watch him shoot hoops alone much longer I'm not sure I can keep smiling and watching and telling him it was a great shot!  I need a friend for Matthew because Matthew needs a friend!  Matthew has joy to share, and someone needs to hear over and over again that Matthew is involved in a pancake breakfast on Sunday morning, and that Matthew is almost done with summer school......and all of the things Matthew wants to share....someone who appreciates Groundhog Day!


Thursday, March 9, 2017

On the night before your Bar Mitzvah

Tomorrow David becomes a Bar Mitzvah, a man in the eyes of the Jewish faith, and tonight I am reflecting on all that this means.  As I think back on David's years up until now I am blown away at all that he has accomplished and the young man he has become.

There was a time that you were very delayed in walking, and then, on the day that your first PT came to the house, you took your first steps.

Then, after months of speech therapy, and still no words, the early intervention team convinced me that you needed to go to a special education preschool program at the young age of 2.  As I went all over town looking for a program that I felt was safe for you, we took a tour of Whispering Pines preschool.  On that tour we met Nancy, an AVB therapist, after an hour with Nancy you said the word "train."

Fast forward to more recently.....you have made me so proud as a child who received a Make A Wish trip.  However, once again for you, it was not quite enough for you to go on a Make a Wish trip, you came back and became an ambassador for their Holiday wish program.

David, you are a determined young man who has a huge heart!  You give your all to everything you do.

Just tonight we were writing your first few thank you notes, and I once again was reminded how very hard you work to do what is so simple for most of us.  To simply write your name takes complete effort and total concentration, but you do it all with a smile.

Tomorrow night we are going to ask that you conquer something that is so hard for you.  Sometimes even just talking to one person at an audible volume is visibly painful for you.  Tomorrow I am going to ask that you say prayers in front of an audience.

Sometimes even me asking you about your day causes you to be uncomfortable when you feel the spotlight is on you.  Tomorrow we are going to ask you to soak up the spotlight and enjoy it!

Sometimes being in a group of people causes you to want to run screaming, and tomorrow the group will be large and they will all be there for you!

Tomorrow David, the day is all about you- all about the amazing young man you have become!

To think back on moments of the last 13 years it is so easy to see some intense struggles, some awesome highlights and so much pride!  Tomorrow I believe will be one of the best moments of my life as I am joined by a group of people who love you and we celebrate who you are.  You are kind, sweet, gentle, and a one of a kind rock star!!!

I love you David Michael Bloom!  Soak up tomorrow as your big day!