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!

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!

Thursday, January 19, 2017

The Bloom Boys Take on Washington

It has been a while since I have written because I am becoming more and more aware that what I write may at some point have an impact on my boys.   As they get older I realize that these moments in time are more theirs to share than they are mine to share.  That said, this blog is a huge part of my outlet and has been such an important way for me to process our lives.  Additionally, it has been an incredible way for me to document our history and all that we have been through.

If you would have told me that Matthew would become such an incredible young man, I never would have believed it to be possible.  He has always had a heart of gold, but now he has a heart of gold and is also a responsible young man who has a business mowing lawns in the summer time.  He struggles so much with forming relationships with people his own age, but he is truly seen as a gem among seniors, little kids and adults.  He can relate to a 2 year old and make them feel so special.  When Jacob has friends over they beg to hang out with Matthew and he engages with them so well.  Often I think this is because he missed a lot of being an 8-10 year old because he was in crisis for so much of this time period in his life.

We went recently to Washington DC and Matthew loved seeing the monuments.  He enjoyed many of the museums but he did them all at his own time and pace.  For Matthew seeing the monuments and the White House were his favorite parts.  For me, I enjoyed being with Matthew on this vacation.  Often he can be exhausting, but this time he was much more able to enjoy time with the family and then he was also able to take a few moments away from the family when he needed to take a break and then return.  It was truly fantastic to be with him and to watch him enjoy himself.  We were so lucky to spend time with my kids, my parents and my brothers family in Washington.

David is spending this year preparing for his Bar Mitzvah.  I am working hard to remind myself that if he says a word during his service "Dayenu, it will be enough".  While my head knows this, my heart continues to travel back in time to when he was born and I had him conquering the sun, the moon and the stars.  It feels like David has come so far in some ways, and yet has so far to go in other ways.

In preparing for our trip to Washington David studied so many books.  He must have carried Washington DC books around with him for months as he prepared for this trip.  That said, it is a challenge for him to answer "wh" questions.  "where do you want to go?", "what do you want to see", all of these questions are a challenge for David and typically end is silence.  While he adored every moment that he was with his cousins, at one point he was frustrated because he feared we were leaving Washington and while we knew he was upset, we didn't know why.  As we asked "wh" questions, he could give us no answers.  
"where do you want to do?"
"what do you want to see?" 
"Why are you mad?"
All of these questions led to silence.  Finally, my dad started offering him places he might want to see and my dad stumbled upon the answer.  David could not leave Washington without seeing the Martin Luther King Memorial.  Once this was known calmness returned and all was good.  We assured David that we were going to the memorial the next morning, and David once again returned to a happy child who truly enjoyed every single moment in Washington.

David toured Washington DC mostly with his cousin.  They conquered every Smithsonian together and she went with him with such true love and caring.  She allowed him to set the pace, and he talked to her throughout every museum.  I followed along giddy with excitement to see him so happy.  For a child who has few moments with peers, it brought me such joy to see him independently wandering through the museums with his cousin.  My niece loved every moment with David and she was able to get him to talk and share these moments in the museum with her.  Truly seeing David with his cousin was a huge highlight of our trip for me.  

For Jacob, Washington seemed to be more about him uncovering who he is.  Jacob is struggling with his identity as a young black, Jewish man in America.  For Jacob seeing the history of African Americans at the African American Smithsonian was intense.  Knowing that Donald Trump is becoming our next President is truly scary for Jacob.  He was scared to uncover the roots of slavery and to learn about sit ins and the fights for equal rights.  While he was scared he also was interested and so this made Washington at times an emotional roller coaster for Jacob. 

I was so proud of the way that he made sure he saw the counter where the sit ins occurred.  While he was tired, and presented as not being interested, once we found the lunch counter, he stood and paid attention to the seriousness of this moment.  

He was taken with Mohammed Ali's boxing gloves that we saw at the National Museum of  American  History.

My favorite moment with Jacob was as we left the Museum of American History.  He saw people selling Black Lives Matter sweatshirts and he stood and looked at the table for a few moments.  As he stood he asked me for a sweatshirt.  When they did not have a sweatshirt that fit him, he asked me to go to the next table to find the sweatshirt.  Again, they did not have his size.  There were multiple sweatshirt options, but he was clear he wanted a plain sweatshirt that simply said "Black Lives Matter".  After a few moments I decided we would buy one that was one size too large as it was important to Jacob and symbolized to me that he understood all that we had seen in Washington.

I am not sure that I have ever been more proud of Jacob than I was in that moment.  He is learning to embrace himself, his culture and his history, and for that I am SO proud!
I know that I alone cannot teach him all that he needs to know about who he is and the history that creates him as a person, but I am working hard to surround him with people who can teach him to be a strong Black man.  His purchase of that sweatshirt tells me that he is embracing with pride the history of Black people.  To me, that was a goal of our trip to Washington.  I wanted all 3 of my boys to embrace the messages of Dr Martin Luther King.  In this time of turbulence in our country, I needed my boys to feel the pride of having President Obama in office. This sweatshirt symbolized that Jacob understood, and we left with me feeling a strong accomplishment.