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!

Sunday, September 29, 2013

David Update

With David I often find my heart lives in my throat- you know the expression your child is like allowing your heart to walk around outside your body.  That for me is David.  I love Matthew and Jacob, but they have more of an ability to care for themselves at a basic human level.  With David, he shuts down.  He worries, but you only know this through his actions, not because he will talk to you about it.  The best I get from David is a shake of the head yes or no when I ask leading questions.

David changed schools this year because his skills class is in a new school building.  For the past 3 years he had the same teacher, in the same school, in the same classroom.  This year he moved to a new school, new therapists, new everything except for his PT stayed the same.  Since school started, David  refused to get dressed one day, and only got dressed after he missed the bus and I promised to drive him and introduce him to my friend the school nurse.  The next day he tried packing everything he owned in his backpack.  We finally settled on him taking his stuffed Mickey Mouse because it came down to that or another fight to get him on the bus.  This morning I came downstairs and he had washed the entire kitchen floor, cleaned the whole kitchen and was just obsessively putting things away.

No 9 year cleans a kitchen unless something is wrong.  this is to say nothing of the fact that he cleaned it with Murphy Oil Soap- so EVERYTHING is a slip sliding mess!  After working to clean the floor from his cleaning, I again tried to find out from David what is wrong.

Is he liking his new school?
Is he enjoying his friends?
Does he like the playground?
Is the work too easy?
Is the work too hard?

I can get no answers....I asked him about home, and he said he wants more time on the IPAD, all kids want more time on the IPAD.  No kid is so anxious about not having enough IPAD time that they will clean a whole kitchen and take a huge stuffed Mickey Mouse to school with them.

We went to see Dr Griffieth, a local Developmental Pediatrician, on Tuesday this week.  As we met with him he expressed concern that David is struggling with a version of selective mutism.,  I am not certain that I agree with this diagnosis.  I do however know that David cannot typically communicate on demand.  If you ask him an open ended question, you are almost guaranteed to get no answer.  He will often answer yes/no questions, but anything more than that and he just sort of stares, waiting for you to give him choices.

Is this selective mutism?  Is this a lack of communication skills?  Does David struggle with word finding challenges?  Does he struggle with anxiety?  I don't know.  For most of these things, the test is talking to a child.  How do you answer these questions for a child who doesn't talk?

Over the weekend David has been a little more talkative than he was all week, and we have talked a lot about the upcoming school week.  He had some time with my parents, just the 3 of them, and I am hopeful that this quiet time and space was helpful to him to help him feel more at peace and relaxed.

His teachers and therapists are working with me to determine if a sensory diet of some sort will help David to feel more relaxed and calm in the morning as he enters school.  He seems to be adjusting each day by the afternoon, but every morning he is struggling with his body being unregulated.

My biggest hope for David is that one day he will have the confidence and abiltiy to clearly express his thoughts and hopes.  No parent knows exactly what the future holds for their child, but for parents of children with special needs, the unknown seems to be even more unknown.  My best guess is that David will hold a job with the support of a job coach or mentor, but I don't know if David will live independently.  David's ability to do math is still below that of your average 3 year old, so things like money management, time management, measuring and cooking are not skills that he has, and are not things that i have a grasp as to how much growth potential he still has.

I was hoping that Dr Griffieth would use his crystal ball and tell me that the future would be ok.  That David would gain skills A, B and C and would eventually marry, have children and work in a grocery store.  Unfortunately, there is no chart to graph where David will end up in life, and I am struggling right now with this fact.  I know that I will support him and ensure that he becomes the best David he can be, I know that when he feels loved and supported and accepted he does best.  I just wish that I could get a little glimpse into the future to keep my anxiety at bay!

Friday, September 20, 2013

Behavior plans

I have given this post a lot of thought, and my goal for writing this post is for someone to tell me where my thoughts are faulty.

In today's schools some of the following are the behavior management plans that I am aware of:
1.  The red, yellow, green system- you move your name down or to a different color for bad behavior
2.  the marble jar- you put a marble in a jar for good behavior, teacher takes one out for bad choices or not bringing in homework
3.  name on the blackboard
4.  loss of recess time for misbehavior

I am sure that there are ever so many more systems like these, but what they all tend to have in common is shaming of our children.  Imagine if you were at a conference with your best friends, and while the speaker was speaking you were talking.  Sure you were whispering, but the speaker had asked for quiet and you had that one more thing to say, so you say it.  Since the speaker heard you, he calls you to the front of the room to puts your name on "yellow".  How will this impact you among your colleagues?  What do you feel as you are being called to move your tag to yellow?  How does your boss treat you later in the day as he sees you are on yellow?  What do your friends say?

As an early childhood educator, I would never allow this sort of system to be used in one of my classrooms.  First and foremost, behavior has a meaning and a reason.  That is not to say that it is all permmissable, but it is to say that there is likely no reason to shame a child for misbehavior.  Determine the problem, solve the problem, the behavior changes.  Move a card to yellow, shame a child, and many children will now just be angry and embarrassed and have learned to simply be more sneaky.

These systems are essentially the new wave version of the Dunce cap.  If you walk into any given classroom 100 times, my guess is the same group of children will be on yellow and red, and many of the same will be on green.  Do you think that as other teachers walk in and out they don't notice those on yellow?  That those children are not seen as the children to "avoid" getting in your class next year?  Who wants a classroom full of "red and yellow" children?

In the past, I ran summer camps for hundreds and hundreds of children.  When I needed a group of kids to do something, often 200-240 kids, all I had to say was I was giving out points for the group that did whatever.  Every group would race to do what I asked.  The kids would encourage each other, the staff would get excited, and in the end all of the kids were doing as I asked.  There was no public shaming. There was no calling out for those who didn't do it.  There were instead high 5's, cheering, name recognition of the kids or groups that acted first.  All positive behavior management techniques.

Now you may be asking, well what did the kids "earn" with those points.  They earned NOTHING.  Let me say that again.  The kids earned nothing tangible at all.  They got high 5's.  They got their group name cheered for.  They got my smile, they got my respect and they got to move on to whatever was next.  It didn't matter if I offered 10, 100 or a million points.  the campers would race to do as I asked just the same. And equally as important, no matter how many or how few points I offered, the result was the same, they got to feel good for doing as an adult requested.

What did this all build?  It built group unity.  It built group spirit.  It created a camp with a positive energy and encouraged children to respond to a large group direction. It built children who were reliant on the value of feeling good about their actions for the sake of doing the right thing, rather than kids who do the right thing for an ice cream party, or a PJ party or some other extrinsic reward.

Probably one of the most exhausting jobs one can have is that of being a teacher.  You have so many little people each with their own wants and needs, and for each child the wants and needs are immediate or at least feel immediate.  Certainly, as the Director of a program, who still teaches at times, but is not spending my day in the classroom, I understand that being in the classroom itself is where the exhausting work is done.  This is where you have to balance needs of little people, and this is where having a system for behavior management makes sense.  Children need structure, and consistency and rules for guidance.  My thought though is that these rules and structure need to be individualized and private.  I see almost no value in public cheering for success, when there is the chance that another child is not having the same potential for success. It has to be more important to ensure that each child's self esteem is protected, than it is to try to motivate children at the risk of publicly humiliating others.

In one of the boys schools, there is Math Madness in March.  As you reach the goal for your age group, you get to sign the Math board in the hallway and have your picture taken.  That is great.  However, for 4th grade the goal is multplication, addition, subtraction and division of all numbers up to 12.  Since David still can't add 1+3 consistently, my guess is he will never make the math board.  For David, this will likely not be a crisis.  However, now think about the typically developing child who is just not catching on to division.  He watches as his friends get their picture posted week 1, and he doesn't get to.  He works extra hard, but on week 2 he still doesn't make it. On week 3 he works even harder, but just misses it.  Does this child still have motivation to work hard by week 4?  Does it matter?  Now all of his friends, and his friends parents, and the whole school know which children know their math facts and which ones don't.  He has been publicly humiliated for a month, and yet still doesn't know his math facts.

Will math madness in April get him to learn them?  Should we give him until May?  Maybe he should work harder?  Maybe his parents should help him.  Maybe......maybe.....maybe.......but maybe there are 100 reasons he doesn't know them......no matter how hard he works, he is struggling.......isn't the struggle enough of a consequence? does he really need everyone to know that he hasn't mastered this task?

In one class this year there is a Bravo board where the children put their initials up because they have done good things....so far I am ok with this.  But then, there is a tag with numbers on it that signify the amount of time that children get for "reward time" when the board is filled.  So basically, if a child doesn't bring in homework or makes a poor decision, the child takes  a minute away from everyone else's reward time.

Using this logic, if Matthew misbehaves, as a parent I should send David and Jacob to bed early as a consequence to Matthew.  Similarly, if we go to the movies, because "everyone has earned a treat", we should leave before the end because of all of the days leading up to the movie when David didn't put his clothes away, Matthew yelled at me, or Jacob refused to do homework.

How stupid does that sound?  Would that really be enough for Jacob do to his homework when I ask?  The threat of losing minutes of a movie?  Would it have stopped Matthew from yelling?  The threat of losing minutes of a fictitious future movie?

Sounds kind of strange when I "implement" this plan at home.  So what is the logic at school?  From what I heard it is for team building, friendship making, and encouraging the children to encourage each other to make good choices.  I don't know about you, but if my time off was tied to me coworker who is always messing up, I wouldn't be too happy, and I wouldn't really feel like encouraging her to do better.  Instead, I would work to get her fired so she could stop messing up my earned time off.

I know that there are other thoughts about all of this, and I welcome people to share them.  So far, I am just frustrated about the fact that public shaming, and group discipline is the best that I am seeing in a world when we have come so far from the dunce cap.  If you change the color of the dunce cap, it is still just that, still just a dunce cap.

Sunday, September 8, 2013

We don't fit in either camp

Sometimes the hardest part for me of being David and Matthew's mom is that we don't really fit into either camp.  My boys both look typical.  You would never guess just by looking at David or Matthew that they struggle to the extent that they do cognitively.  Both boys also have some incredible strengths that in some ways hide their weaknesses.  For tonight, this is what I am struggling with.

David isn't toilet trained, and for the most part I have taken it in stride.  It isn't easy.  He wears underwear because most of the time he is urine trained, but recently even that has become less consistent.  He has never been bowel trained, and honestly I don't even know what to do to have him become bowel trained.  I do know that for today, I am exhausted.  I am physically tired of changing his pants.  I am physically tired of throwing out underwear.

I have heard all of the suggestions:
Have him try each night at the same time to use the toilet.
Have him walk around naked.
Have a smiley face chart for success.

I have heard all of the understanding, sympathetic cheerleading:
My son toilet trained late too- Really, because David will be 10 in January so unless your child was 11.......
Have you taken him to a GI doctor?
Sometimes boys are just slow.......

For tonight, I am just tired.  I need to just put extra clothes in the car, because that would solve part of the problem for me.  If we have clothes to change into, then this goes from being a big deal to being a solveable problem no matter where we are.

To get graphic for a moment.....for  most of his life, David was constipated, but at least that meant the poop accidents were neat and tidy.  Now, he is taking medicine to unconstipate him, but this is leading to nasty gross accidents, and well ,while I don't want him in pain and constipated, there is something to be said for neat and tidy accidents.

In other David news, his anxiety about school continues to rise.  How do I know this?  Because the number of items David is "organizing" around the house is increasing at a rapid pace.  The more nervous David is the more he organizes, basically as a way to create order for himself.  Currently for us as a family though this means we are missing:
1 credit card
1 Itunes gift card
1 Macy's gift card
1 baseball t-shirt
and who knows what else.

The hardest part with David is that once he "organizes" something, he cannot/will not tell you where he put it.  All he will do is copy whatever you say.  So basically the conversations become maddening!
Me- "david where did you put Mommy's credit card?"
David-"mommy's credit card?"
Me- "yes, did you play with it?"
David- head shake yes
Me- "ok, if you played with it, where did you put it?"
David- "put it?"
Me- "yes did you put it upstairs or downstairs"

And then he will just choose  a random place, but that place is never where he put the item...I don't honestly know if he knows where he put the item.  I don't know what he is thinking or what he is doing.  I do know I have now torn the house apart lookng for these things, and he is one hell of a hider.

One time I got a $100 bill for my birthday and David opened the envelope took out the $100 bill and put it in a piggy bank that we never, ever, ever use.  I didn't even remember having this piggy bank. I begged David to tell me where the money was, I pleaded, I asked, I yelled, I got exasperated and finally I gave up. Almost a year later, as I was going through and cleaning out a shelf I found the piggy bank, opened it and the $100 bill was inside it!

So basically, as I try to stay calm and remember that he is nervous about going to a new school, and remember that likely I will find these items all in good time, I am losing my mind.  I am debating getting a box to lock up important things until David is calm again, and settles into school, but I hate locking up our lives.

For now, I am going to try to breathe and remember that this too shall pass.  One day he will either stop shitting his pants, or he won't, and one day I will find these missing items, or we won't.  My mantra is think big picture.......support him through this change to a new school.  Soon he will realize that it is no big deal.  He will love Glenmont as he loved Hamagrael.  Tonight my mantra is not calming me down.

Thursday, September 5, 2013

Rosh Hashannah 2013

Sometimes when I post, it is because I have been pondering and thinking for a long time about a topic. Other times, it is because I have been full of emotion and just need an outlet.  And still other times it is because I have had a variety of random thoughts in my mind and just need to get them on paper.

Today was Rosh Hashannah, the beginning of the Jewish New Year, and so for tonight, I will post my thoughts as we end one Jewish year and begin another.

Thoughts on Matthew:
This is the beginning of an important Jewish year.  A little over a year from now, September 20, 2014, my son will become a Bar Mitzvah.  As we go through this year, he will learn something about leading the service for his Bar Mitzvah.  He is the most musical person I know, but I still have no idea what his Bar Mitzvah will look like.  Will he chant Torah?  Will he sing a prayer or two?  Is there  a way we can highlight the Beth Emeth band and allow him to show off his drumming skills as part of the service?  Lots of questions, not too many answers, however we belong to an amazingly supportive temple, and I am sure as we go through this process we will find answers together that will create a special day for Matthew.

For the last few months Matthew has been obsessed with hugs.  Unfortunately, hugs for Matthew can make the person being hugged feel a little uncomfortable- this may be the hardest sentence I have ever written.  For a while I thought it was just me.  I am not the world's most huggy person, so the number of hugs he requests in a day was exhausting me.  I have now heard from enough people that he is asking for too many hugs or that his hugs make them uncomfortable so I know it is not just me, however, each and every time it saddens me.
Every mom wants to hug their child.  So when a hug or a sign of affection creates stress, that is a challenge.  To tell your child that they have had enough hugs for the day, is an awkward and stressful comment.  To have to tell your son to ask his grandparents before hugging them is in some ways unnatural.  However, this falls into the category of  "if I don't teach him who will" and so I fight each night through the awkward with the knowledge that I am responsible for ensuring his success in the big, real world.

Thoughts on David:
David has had a few huge successes recently:
1. He is telling Jacob when he is hungry!  This is HUGE!  Since he was a baby he never cried when he was hungry.  He has never, ever asked for food or drinks.  In the past few weeks David has started to act up when he is hungry but then when Jacob asks him what is wrong he will tell Jacob that he is hungry.  He still will not readily tell me, but we are making progress.  Recognizing hunger is the first step towards identifying emotion and meeting his own needs.  My hope is that recognizing hunger will lead to him also recognizing when he needs to toilet.

2.  David is expressing emotions much more clearly.  I was supposed to go with David to drop off his school supplies on Wednesday.  I met Jacob and his friend at Jacob's school to drop Jacob's supplies, and then i was supposed to meet the babysitter to get David and drop off his supplies.  Unfortunately, I received a call that there was a problem and I had to go back to work.  I raced back to work, and David went into melt down mode.  The sitter did her very best to help him, she took him to school to drop off supplies, but nothing she did could calm him down.  They went home and he tore apart his bedroom, and finally tired himself out, but still no one knew what was wrong with David.

When I got home, I spoke to him about his behavior, and reminded him that he needs to behave for babysitters.  I asked him question on top of question to try to figure out what had gone wrong.  I asked if he was worried that I was mad at him for tearing apart his room, I asked if he was sad about going to a new school, I asked questions and questions and questions.  Finally after almost an hour of him just not himself, throwing things, and attention seeking, David's eyes filled with tears, and I realized I had one question that I had not yet asked.....I asked David if he was mad at me.  I finally got a yes.  He was mad at me.  I didn't bring him to drop off his school supplies and he was mad and rightfully so.

I had "chosen" work, over David and David was pissed.  All working parents know that it is a challenge to balance work and family.  For a single mom, the challenge is just that much more intense.  No matter what babysitter I send with the boys, there are tasks when the kids need me, and when I am not there, they are mad.

Today at Rosh Hashannah services my dad told me that I should have asked him to take David.  Now that they live close, he would have been happy to help.  Once again, David spoke up and was clear that in this situation even Papa wouldn't have helped.  He wanted his mommy, and his mommy is now aware that there are times when I have to prioritize the boys, because these little moments are too important to miss.  Work will always be there tomorrow!

Thoughts on Jacob:
Jacob is the toughest little mama's boy I know.  He acts all tough and independent, but then can melt in 10 seconds.  He sat through Rosh Hashannah services today because he was afraid to go to the babysitting room without me.  He wouldn't go see the shofar be blown on the bimah because I wouldn't walk up with him.  We were only 3 rows away and most other kids did not have parents with them, so I was trying to encourage Jacob to strive for independence....instead, he just stayed in his seat and watched the shofar from there.  It is always a surprise to me when he goes from being so tough to so dependent on me but I know he will only be little for a little while longer, so I will take and appreciate his need for his mama!

Jacob has a way of seeing the world that constantly amazes me.  He knows how to access both of his brothers like no one else.  He sees them both so clearly that it is incredible.  Today we were at a playground with friends and David had an pee accident.  Jacob just matter of factly told his friend as they played on the swings that David isn't potty trained yet.  Like it is nothing at all to have a 9.5 year old brother who still pees his pants. Jacob just accepts his brothers for who they are.  When Matthew is happy, no one can make Matthew laugh like Jacob can.  On the other hand, no one can fight with Matthew like Jacob does!  However, the fact that they can go from laughing to fighting and then laugh again all over Jacob's antics and bonkers behavior is what is the energy behind our family.

Here is to the end of one Jewish year and the beginning of another!  L'shana Tova- a happy new year to you!

Monday, September 2, 2013

Store clerk commentary

Today we went on a family surprise vacation day.  It has been a long summer. I have changed jobs and so the two weeks I usually have off with the kids, instead i have been working to set up a new school  in a new agency.  It has been 2 weeks of high stress, but thankfully the boys have had a great 2 weeks with some fabulous babysitters.  I however have felt like I have missed summer this year.  Between it being a rainy summer and a loss of vacation days.....I was in need of a get away day.

The boys and I woke up this morning and I announced we were running away for the day.....we were going on a day of surprise adventures and depending on their behavior the adventures would change.  My plan was to head to Lake George, spend some time on the beach, wander through the shops and let them each purchase a souvenir and then hit up the outlets for some back to school necessities- sneakers, clothes etc......

Instead, as we drove up to the Lake my eyes were quickly attracted to the parasailors and the boats.  For many summers now I have wanted to rent a boat and spend a day on the lake with the boys but between fear and expense, I have talked myself out of it each year.  Today, the boys excitement was palpable as we approached the parasailing location, but as Jacob and David looked at the pictures they quickly decided they weren't ready to parasail.  We went further up the Lake and found a place to rent a boat, and I decided to live in the moment and take on this adventure!

What a blast....once we got over the initial worry on my part that  we could all drown, we settled into a totally fun 2 hours.  The boys and I took turns driving the boat, and David protected our bags from the water.  He was the most fun for me to watch, because he was the most nervous, but over time he warmed up to boating and he spent the last hour on the boat giggling and smiling and just warming my heart with his smile.  Every time we hit a bump and he got splashed he flashed me his toothy grin.

After we got off the boat we went for dinner and then it was time for some junk shopping.  I told the boys that they could either have a candy treat from one of the candy stores or they could purchase a toy to take home.  We went in and out of multiple shops looking and poking around.  We went into one of the stores and we were immediately greeted by an employee, who greeted Jacob by name.  I racked my brain to try to figure out who the employee was...did we know her?  How did she know Jacob?  I quickly realized that she had heard me use his name, and as the 3 boys and I were in the small shop I became accutely aware that their larger than life personalities were taking up too much space in the little shop.

I was just going about life- helping David look for his toy, checking out what David was looking at and stopping Matthew from playing with the toy guns.  I was doing the balance of parenthood, and the balance of parenthood for my 3 boys- the constant dance, but I was also in such a happy place.  We had been in and out of at least 10 stores.  Typically, my boys do not whine in stores, they don't get upset when I say they can't have something, they are some of the best male shoppers I know.  These are things I am proud of.  We have window shopped together for years, they are pretty darn good at it.

Jacob found a bow and arrow and was over the moon so I paid for his purchase and gathered David and matthew, and as we were walking out of the store I heard the lady comment to her coworker, "that lady has her hands full!"  I couldnt help but giggle.  Today I had felt a few times like my hands were full, but I was carrying a bag full of towels, bathing suits, a camera, and guiding the 3 children and driving a boat.......my hands were full of items, but in the way of my boys, it was a pretty easy day.

We enjoyed being together, we swam in the Lake, we drove around the lake for 2 hours, we window shopped, went out for pizza and had an all around great day.....funny that to me it was just a regular day, but to her " my hands were full!"