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!

Wednesday, December 18, 2013

cutting edge of a diagnosis

David is diagnosed with a somewhat rare genetic condition- he has a duplication of a small part of his 15th chromosome.  Since we found out about this duplication about 4 years ago, this duplication has been recognized more and more and now there are actually 4 clinics across the country that are studying this condition.

I keep hoping that the more this disorder is studied, the more likely it will be that there will be answers, and the magic pill will be found.  I am not expecting the magic pill that makes David better, I am pretty convinced that David will be David and I am totally ok with that.  Part of what makes David really special to me is his innocence.  He is still really happy at the age of almost 10 sleeping with his 2 giant Mickey Mouse stuffed toys.  He loves cook books and doing puzzles, and is just generally a pretty happy kid.  He doesn't need a lot in life to make him happy- he is happy to be with other people, but is also equally happy to spend hours building and playing with legos by himself.

By magic pill, however I m hoping for the explanation as to what makes David tick, and when he struggles what is making him struggle.  When David was first diagnosed with seizures at the age of 4 he started taking a medication called Topomax.  For David, this was medication that created a huge change in his entire being.  His language blossomed, his behavior calmed dramatically, and he was much more aware of all of us.  This was the first time that I felt like David was really connected to me. 

Since then, he has tried other medications but the only one that I have seen have a true impact on him has always been the Topomax.  In late September, David was taken off of the Topomax because he had a kidney stone and this is a known side effect of Topomax.  In October there was a drastic change in David's behavior in school, he went from being a calm, well behaved student in his classroom, to really needing a high level of support each day until around 11:30. 

In November, David went back on the Topomax for a trial period, and there was again a change in David.  The calm David returned, and while he wasn't back to his baseline behavior of September, he was doing better and better each day.  Once again, in the beginning of December he came off of the Topomax, and once again his behavior plummetted.  He again was in need of a high level of support each morning in the classroom.

For the past week I was trying to get in touch with the specialist at the 15Q duplication clinic to get him to help me figure out what was going on with David.  Was he having seizures in the mornings?  Was the Topomax doing something else for David?  Was he having headaches?  He often would point to a part of his head when asked if something hurt or was uncomfortable.  It is so frustrating to know your child is struggling, but not know what is wrong and not know how to help him.

The only thing that I know for certain with David is that he is a child who will ALWAYS do as well as he can when he can.

The feedback that I received from the specialist was that children who are autistic often do well on Topomax because it is a mood stabilizer.  As I read this feedback my heart sank.  For so many years David has been diagnosed as autistic, but he is not at all autistic.  He has symptoms that are similar to a person with autism- he struggles with communication, his eye contact comes and goes, he struggles with social relationships and he has some repetitive behaviors.  However, all that said, David is very connected to me and many other people in our family, essentially once you are in David's world the relationship he has with you is very close.  He is able to communicate, but often chooses to use few words, however at other times he is super chatty and giggly. Essentially, to define him as a person with autism just simply does not explain who David is and does not describe all of David's struggles completely.

In many ways I feel like I have been fighting against an autism diagnosis for David for years, so to read this information from the specialist, who is supposed to totally know about David's genetic condition, was disconcerting.  Thankfully today we had an appointment with David's local neurologist and I was able to really ask him questions and get some great feedback.

Our local neurologist knows David- this was even more clear today as he teased David.  David is ALWAYS chatty as we enter the waiting room in the doctor's office and is almost always silent inside the office.  I didnt realize that the doctor knew this, however today he teased David and wanted to know why he won't talk to him.  The doctor referred to the "morning David" and the "afternoon David".  The "morning David" has a twinkle and a liveliness in his eyes and when he talks there is an enthusiasm and speed to his speech that the "afternoon David" doesn't have.  I loved that our doctor knew these things.

The doctor explained to me that almost anyone these days with a developmental disability could be classified in the category of autism somewhere, but that he agreed that David is not autistic.  By virtue of him having a genetic disorder, David cannot be diagnosed with autism.  

The doctor also explained that we are in a circle of the chicken and the egg.......When David came off of the Topomax, did David's behavior change because he stopped sleeping as well? Did he start having headaches?  Did he feel more confused because the Topomax was giving him clarity or calmness?

The big answer for now is "we don't know."  David and I are at the beginning of the age of the 15 Q duplication.  This is a newly recognized condition, that means we don't have centuries of data which shows what medications work best and why they work best.  We don't know what happens when these children go through puberty.  We don't know a lot about this disorder.

We have a better chance now more than ever to find out from a larger group of people how this condition affects people.  With the internet and the world being more interconnected, families can share with each other how the condition is affecting their child.  What medications are helping their children, and what makes their children struggle.

For now, we are lucky to have a local doctor in our corner who knows David and is willing to try a variety of things to make David be the best David he can be.  He is willing to listen to me and David's teachers and to hear our thoughts about what is going on with David, and to use these thoughts as working theories.  He is willing to hear me, as David's mom, as the person who knows David intimately.  For me, that is the most important thing.  I need a teammate, who has the medical knowledge to help us, but who also has  a desire to help David be the best David.  I need a doctor who knows David intimately, and a doctor who knows and cares about my morning David as well as my afternoon David!

Sunday, December 15, 2013

The difference of a year

As we are heading into the end of 2013, I find myself doing a lot of reflecting about the end of 2012.  It is interesting to me that the struggles of life change so much from year to year, and our ability to cope changes so much too.

Last year at this time, Matthew was stealing candy, struggling in school, at the lowest point he has been with food obsessions, and I was looking to get him into respite and the psychiatric hospital.  We hit our lowest point ever on New Year's Eve.

Matthew was last at Healy House in February, I have not even called for a placement since then.

Obviously, given where we were last year at this time, we are really flying high this year.  That said, each of us adjusts to our norm, and that is where we live on a daily basis.  I know myself, I am just feeling tired like I wrote in my last post.

What I am never completely certain about is where the other two boys stand.  Tonight I got another reminder, that I have to keep life in check and be aware that while I am feeling like we are all ok, because we are better than we had been, the boys do not judge our life against the past, they judge it against the life they hope for, the lives their friends live.  The lives that include play dates that are stress free, and big brothers who make life fun, not so challenging and unpredictable.

I live knowing what our worst was,and anything better than that I can live with and feel pretty good about.  I remember there were times that we have had the police here multiple times in a week.  There were times the little boys needed to be picked up and removed by friends multiple times in a week.  We are doing ok, by the comparison to all of that.

Jacob and David and I spent the evening watching Karate Kid.  We snuggled under a blanket and just loved being together.   Matthew watched tv in a different room, and was pretty happy.  After the movie was over, I sent the boys upstairs to get jammies on and I thought we would read books before bed.  What should have been the end to a great day!

A few minutes later Jacob came downstairs and was obviously upset.  I hadn't heard any screaming and had no hint that anything was wrong.  When Jacob wouldnt tell me what was wrong, I called Matthew in to find out what had happened.  After going on and on about how Jacob was mad, and how Jacob told him he was going to hit him, I finally got the whole story from Matthew, that Matthew had teased Jacob and mimicked how Jacob talks.

Jacob is a little guy who is very, very aware of his speech struggles.  He knows he is not well understood, he knows that he has trouble pronouncing words and he works his butt off in speech therapy and has since he was 18 months old.  To have Matthew tease him for his speech is a low blow, especially because it came out of nowhere, all Jacob was doing was putting pajamas on.

As Matthew admitted what he had done, Jacob burst into tears that he was going to get a suitcase and he was moving out of our house.  He cried and said he would only stay with a lock on his door so he could be alone when he wanted to and be upstairs without being teased.

Every family obviously has these moments we are not the only ones who struggle like this.  The difference is the intensity this all comes with and the pure exhaustion.  It is tiring to be Matthew's brother.  It is the same over and over and over again.  It is stressful, because the boys never really know when the anger is coming.  Almost every bedtime ends  with a mania moment for Matthew, so there is an odd teasing or name calling or increase in unpredictable behavior right before bed.  It is truly enough to make me uneasy each night, and I am the grown up.  I cannot imagine being Jacob and David and dealing with this every single night.  Every......Single.....Night.

Because Jacob is the brother who will react to Matthew, Jacob is the brother who gets bullied.  Jacob is the brother who is the target for matthew's intensity.  Jacob is tired.  He was clear tonight that if he got a choice Matthew would go to Healy House.

That is such a big statement from a 7 year old.  It is heart wrenching and yet it is a statement that I so completely understand.  Unfortunately, on top of Jacob already feeling tired, I just found out that Matthew's respite provider who works on Sundays is moving and so this would have been his last Sunday with respite, but it was cancelled because of the weather.  This respite truly has been a savior for us.  It has been the time that Jacob could have friends over, it was the time that Jacob could enjoy the quiet in the house.   I strongly believe that it has been the respite on Saturday and Sunday that has contributed to Matthew succeeding over the past few months, and now it is ending.

My hope is that by the end of January we will have a new respite person in place, but there have been many times that it has taken months to find a new respite provider.  It seems like it is one of the hardest jobs to fill, and we have been blessed to have some great providers, but the wait between providers can be full of anxiety.

I am so thankful that the last almost 365 days have been days of growth and development for Matthew and my entire family, but on a night like tonight even the growth that he has shown is still overpowered by the struggles he has.  I will keep working with Jacob to help him understand that which Matthew has control over and those parts of Matthew that he doesn't have complete control over.  I will help Jacob to understand that it is ok to feel what he feels, and that it is ok to be tired of being Matthew's brother.  I will let him know that at times I am tired too, and even more importantly at times Matthew is tired......because when we get right down to it......I believe that it is truly hard to be Matthew in so many ways.

Friday, December 6, 2013

my ears are roaring


I can't take it....from the very minute I get out of bed he is talking......talking about the insane....talking about things I can't think about before my eyes are opened and I have had caffeine......I wake up each day to:
"what's for dinner", 
"what are we doing tonight",
 "why are we having that for dinner?"
 "how come we aren't doing anything fun"
"we never do anything fun"

All of this repeated over and over and over for the 10 minutes until his bus comes.....all I have to do in the morning, before he gets on the bus, is make his breakfast and get him out the door, but it is the longest 10 minutes of my day.  

The longest 10 minutes until I get home and it starts all over again.  As soon as I walk in the house, even if the sitter has prompted him to let me come in and put my stuff down, it starts again....
"what's for dinner?"  My answer is almost always, "I don't know."  I don't honestly know...sure, I know if I am defrosting chicken or beef, but what exactly I am making I don't know.  Every single night, he responds by telling me what is for dinner......
IF YOU KNOW.....HOW ABOUT YOU DON'T ASK THE QUESTION....this is what I want to yell!

Instead, I explain that I am not ready to talk about dinner yet and I will talk about it in a few minutes, as soon as my stuff is down and I have greeted everyone.  As soon as I have breathed and transitioned from work world to home world.  As soon as I have touched base with the sitter about how the afternoon was.....as soon as I am ready!

Regardless, as soon as I tell him what is for dinner, his response is "ugh...can't we go out for dinner? why can't we go out for dinner?  I hate X (whatever I have said is for dinner!)" And every night we go through why we are not going out for dinner.  Why he will eat whatever is for dinner.  And, at dinner time he always eats it and wants seconds.......

Tonight we are at the end of Hanukah, and I get that it is exciting for him.  Really, I do understand.  That said, the more he is excited, the more I am drained.  

It was only a few years ago, that during hanukah he lit paper towels on fire many mornings in a row.  Now every time we light the candles, he reminds me that he "won't light paper towels on fire anymore". 

Honestly, it is a time in my life that was horrible.  It was the beginning of the descent into realizing I would be dealing with a child with mental health issues for the rest of my life and his life.  I don't want to be reminded of it every time we light the Hanukah candles.  I don't want to remember the emotions I felt as I found paper towels on fire in my kitchen.  I don't want to remember those dark days when I felt like I couldn't sleep for fear we would wake up to the house burning down.

On top of all of this, whenever Jacob and Matthew are together right now Jacob is screaming....an ear piercing nerve wracking scream...."he is looking at me", " he is talking to me", "he touched me", "he touched my stuff"!!!  My assumption is that Jacob is done as well....and I get that...but honestly, screaming    DOESN'T HELP!  It is like a hot  poker to my eyeballs!  It is insult to injury.  

I took Jacob to see a new psychologist the other day, and I am beginning to realize that Jacob may be dealing with a version of PTSD.  Jacob is amazing when we are in crisis.  He responds calmly and seems to just take each crisis in stride.  However right now,  when we are not in crisis, Jacob is truly living with no reserves.  On the way to temple tonight Matthew wanted jacob to close the car window, Jacob said no, and Matthew kicked Jacob.....pretty much a story like all brothers, except for Jacob's response.  He broke down in hysterical sobs and just kept saying he wanted to go home.   Truly sobbing, an extreme response.....sure it was not ok for Matthew to kick Jacob, but my much bigger concern is the response from Jacob.

The problem I have is that I am trying to figure out and balance what is causing Jacob's extreme response.

 Is it all due to the life he has dealt with over the past few years?
Is this a stress response?
Is it due to stress from school?
Jacob's learning challenges are becoming more and more obvious, and one of the things he told the psychologist is "I am dumb because I can't read".  (That was one of the saddest things I have heard one of my boys say in my 12 years of parenthood) The psychologist was great and we both told Jacob about Albert Einstein and other smart people who had a hard time reading.  Life wasn't fixed in 1 hour with a psychologist but I do think that this psychologist may be able to help Jacob over time.

For now, I am trying my best to destress life for Jacob, and to help him understand that his feelings are ok to have, but that his response to those feelings he is responsible for.  He is able to be sad, scared, upset, or to feel any other feeling he may have.  And I am absolutely here for him, however, I expect that he will use his talking words rather than his yelling, or screaming, if he needs me to help him.  He did a pretty good job meeting this expectation tonight.

I am planning to use the weekend to really focus and make some tough parenting decisions. Jacob's teachers suggested a tutor once a week to help him with learning issues.  I love his tutor, but I just don't know if after a full day of school a 7 year old needs an hour of tutoring.   Does Jacob see this time as "punishment"? Is it just playtime with a fun grown up who is working on learning skills?   Is it possible for Jacob and I to work on the same skills and decrease his stress level?  Would he be willing to learn as much from me?
So far he has only had 2 sessions of tutoring, one was great, one he came out with a soaking wet shirt form chewing on it the whole time.  Do we try it a few more times?  Again, just wish that there was a crystal ball so that I would know where Jacob would be a few months from now.

My only goal for all 3 of my boys is to ensure that they come through their childhood feeling self confident.  I want them to know that no matter how much they have struggled that they are smart, funny, loving,caring boys.  To me, this is what is important.  As long as their identity and self confidence is in tact, everything else can be compensated for.

Wednesday, October 30, 2013

update on the boys

It has been a month since I last wrote a post on the blog.  A month full of lots of great times and moments, but we are entering the tough season for Matthew and it is becoming obvious that his impact on the family is beginning to show.

This morning Jacob woke up and told  me he had a nightmare, he said that he dreamed "matthew got mad".  He then went to school and his teacher noticed he was "off", when she asked him about it, he told her that Matthew got mad about a cookie and Papa had to come help.  I am assuming this was his nightmare because it didn't happen today, but I am sad that for him this nightmare was real.  He is again seeing Matthew's anger, and his explosions.  Three times this month David and Jacob have gone to friends houses because of Matthew's anger and upset.  While I am doing a great job, and our sitter is doing a great job of getting David and Jacob out of the house when Matthew is exploding, I have to keep remembering that this is not enough.

It is not enough to assume that since they are spared the intensity of the explosion that it doesn't affect them.  For Jacob, I am beginning to wonder if him leaving the house may be more challenging.  At the house, he knows what is happening with Matthew, when he leaves, I worry that he is more anxious about what is going on and how angry Matthew is.

I am glad that Jacob's teacher pointed out to me that he is struggling because to me, as the adult, we are still doing better than we have been in a long time.  The explosions are still less explosive.  The intensity is less, and so my anxiety is not too high.  I am realizing that Matthew is teetering a lot of the time and is on the edge of an explosion, but from where we have been in the past, things are ok.....for me as an adult who has some control.

For Jacob and likely for David, they are feeling the intensity bubbling and I have to be aware of their emotions surrounding life.

David is also struggling but for him it is not with behaviors as much as it is with scattered, disorganized thoughts and less control over his body than normal.  His brain seems to be spinning and almost "on high".  Tonight he could hardly form sentences because he was repeating sounds at a fast rate of speed.  He spent his time at Hebrew school chewing on his shirt, and at school he was racing.
I don't know for David what all this means-
is there some underlying seizure like brain wave activity? maybe.
One of his meds caused him to have a kidney stone, so we stopped that med.  Is this change due to that?
Do we restart it at the risk of a new kidney stone?
Is this a reaction to Matthew?
A reaction to his new school?
He doesnt appear to be able to tell me, but watching him struggle is so hard.

For Jacob I have been coping with the fact that I have to start working to determine what his learning challenges are.  Jacob's learning is significantly delayed at this point.  He is turning 7 and still struggles to identify all of his letters.  His understanding of letter sounds varies almost daily.  He has some comprehension of what numbers mean, but cannot consistently understand basic addition beyond +1 facts.  Basically, the question that has to be answered is what is his IQ.  If it is determined that Jacob's IQ is in the normal range, but his learning and cognition is below normal, then likely he has a learning disability and we will learn tools to help him learn.  It will have an impact on his life, but with time, and great teachers, his potential is strong.

However, if it is determined that his IQ is below average, we will have to determine what has caused this lower IQ and what support he will need to continue on a path of learning.  There is no obvious "cause" of Jacob's learning struggles, so the testing will hopefully provide some answers.  Socially at this point he is a young, almost 7 year old, who like most boys, is immature, but his social struggles are no where near those of his brothers.  My goal is to help keep his confidence and self esteem high so that we are not dealing with social issues and self esteem issues over time.

On top of all of this that I am trying to sort out, I am starting a new job next week.  My goal is that this job will allow me more time with the boys- more time for reading, playing games, hiking and just being a family.  My current job has me getting home very late each day, and that has caused a lot of stress this year for all of us.  Hopefully the new job will allow me time to work with each of my guys on the skills that they need and to continue to answer the questions about what makes each of them tick.

The end of October is definitely the start to Matthew's rockiest time.  My hope is that with the support of his respite workers, more time with me at home, and my parents living closer, that we will continue moving forward.

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!"

Tuesday, August 13, 2013

Our village is quite a village

Tonight I gush!  I smiled a smile so big that my cheeks hurt!  I was a mom of a son in a performance who danced, and sang, and was just one of the gang.  It was as if someone read my last post and decided to give me a mom moment...but not only was it a mom moment, it was an awesome mom moment!  It was a moment that allowed Matthew to shine!

Tonight was the Zim (song and dance festival) at Camp Givah- a  Jewish day camp in upstate New York.  Matthew has only been at camp for 2 days, Monday and Tuesday, and so I wasn't even sure if he would be in the song and dance festival, but the camp director quickly assured me that all campers would be participating.  Given that Matthew is super musical, I always expect him to excel at singing and dancing, and I am usually so sad when he is in a performance because his disability screams out at me ( I know this is my perspective not the perspective usually of those in the audience).  Usually I see him wiggling a lot, and not walking in the right way, or being reminded to settle down etc......tonight was different.

Tonight he walked into the auditorium with the rest of the camp, clapping his hands and following the group.  Then when his group got on stage all of the kids put their arms around each other and Matthew was right in the middle of the group.  He sang with the kids, he was still, and just one of the group!  I was so happy, but the best was yet to come.

After the song his group was to do a dance.  He was INCREDIBLE!  He danced the entire routine....jumping and clapping in rhythm with the group.  He smiled and loved every minute of it but he never strayed from the routine! It was a mom moment that I needed!  I needed my boy to be part of the group.  I needed to see him happy, and dancing and with peers.  Tonights Zim gave me all that I needed....and even more!

I have been bringing David to his camp this week for the first time this summer.  Before this he was taking the bus to camp right from summer school.  I have loved walking him in to camp each day.  He has a favorite counselor, Rachel, who he rushes in to see each morning.  He loves doing puzzles and Rachel has spent the summer doing 500 piece puzzles with him.  Last summer she played hundreds and hundreds of games of UNO with him, so I am sure the puzzles this summer have been a nice change of pace.

David is not a child who shows that he likes too many people.  For those who he really likes he has a coy smile and a sense of comfort that he doesn't show to just everyone.  Well yesterday when I dropped him off he was just standing there looking at Rachel.  I went to talk to the director for a minute and walked back by David and he was still standing looking at Rachel.  When I asked him what he was doing, Rachel explained that she was going to get him a puzzle but had to wait a minute for another staff member to come cover the room.  I looked at David who was smiling the biggest smile, and I asked him if he was going to stalk Rachel until she got the puzzle and he broke out into a full tooth smile, giggled, and said "yep".  It was a little word, but the smile and giggle were priceless.

My boys are awesome....they are crazy making, and challenging, and exhausting, but also at the core, they are each fabulous!  They are fabulous for their very own reasons.  For those people in our lives who treasure the parts of them that I either cannot nurture, or that I find exhausting, I have a special fondness.

Matthew is currently obsessed with languages, but his counselor is loving his obsession with learning hebrew.  What  is exhausting me is being nurtured at camp by a fabulous counselor.

I love puzzles, but would really struggle to find the time to focus and do puzzles like Rachel has this summer-  Rachel has a soft spot for David and has nurtured him so much!  He is forming friendships, and has started chatting more and more as they do puzzles together!

Jacob is bouncing back and forth between being self confident and introverted constantly recently.  He seems to be trying to find his place again between big kid and little kid.  I loved spending the day with him today at my school, but I loved it even more as I watched him mess around with the counselors at the Zim tonight, stealing their hats, and giggling and laughing the laugh of a trouble making little boy who idolizes a teenage counselor!

Our roller coaster ride is full of highs and lows.  Luckily, while the lows are lonely and intense, the highs are so much better and are cherished longer!

I am so thankful that I have found 2 camp programs that are dedicated to including my 3 boys and are so amazing!  The boys have each had a rich summer experience, and tonight I had my mom  moment that will carry me through until the next one!

On Tuesday Matthew leaves for 6 days at a Jewish sleepaway camp program for children with special needs.....something tells me the next mom moment is just a few more days away!

Sunday, August 11, 2013


This weekend has just been a weekend when I am  alone with my thoughts or the boys, things are not so good......I am trying to remind myself that this is  a big week.  I am ending my 13th year at a job I have loved to move onto a new adventure....I don't do new so well.  I am at the same time excited and scared.

Add to all of this that summer school has ended, the boys are entering their last week of camp, and typically after Friday we would have the rest of the summer together.....instead, this year, I start my new job and I am piecing together child care.  I am sure the kids will be fine, but all of the change will lead to increased anxiety, which will in turn lead to increased behaviors.

I had set up a huge surprise for Matthew today with his respite worker- he was supposed to be going on a 4 wheeling adventure with a local not for profit agency called 4Wheeling 4 Healing.  I brought him to the place we were meeting them, and surprised him with the idea that he was going 4 wheeling for the day.  Jacob, David and I said goodbye, and we headed off on a much quieter adventure.  I was in the middle of getting a haircut when I got the call telling me that a tire had fallen off the trailer and so they had to call off the 4 wheeling adventure for the day because they had to get the trailer fixed.

The people from 4 Wheeling 4 Healing had done everything possible to try to get the trailer fixed so that they could get back up and running and give Matthew his amazing day, but it just was not to be.  We are set to reschedule, and I am sure that Matthew will be even MORE excited this time around.......

For me though this felt like our life's karma.......I am in such a debbie downer phase right now, as I am filled with anxiety.....would it have been TOO much to ask for his surprise to just have gone off without  a hitch?

I am spending hours watching families post their summer pictures on facebook- boating, great escape, days with friends on the lake, time at the pool, all sorts of adventures.....even outings to the movies are filled with pictures of kids and their friends.  Last night we drove out of our neighborhood past 10 boys ages 11-13, all together for  a sleepover party.  MY SON IS 12!    Will he ever have a friend?  Will he ever be invited?  He knew all of their names, but he is not their friend.  In his head he is, but in reality, well, I know he isn't even an acquantance in their world.

Trust me, I get it....he is exhausting.  Often I wake up tired from him.  I wake up to the tv blaring, the IPAD blasting music and him listening to a different song on the computer.  I am woken up in the wee hours of the morning to be asked what's for breakfast and can he get out of bed.  Then I am woken a short while later to find out what time is lunch or some other crazy question.  He asks questions, his questions have questions, he is awkward, a little off beat and very immature.  That doesn't change the fact that my feelings are hurt that he has no friends.

It hurts my feelings daily to look at facebook and see all of the things families are doing.  And then to talk to moms who say how hard it is...I want to scream and shout.  Hard.....you want to know hard?  Hard is being exhausted.  Hard is your 9 year old never, ever, not once, not even once, having a BM in a toilet- it is the bags of dirty clothes that I am getting from camp weekly because he had another accident.  Hard is knowing that your kids aren't included even when the families of other children with special needs get together.

To be truthful, hard is knowing that I am jealous of all that everyone is doing because I chose this harder life.......even if my kids didn't have special needs, a single mom doesn't have the disposable income for life's extras......but all moms want to give their kids the best, and for me that is no different.  I want to take them boating, I want to go tubing, I want a day at Great Escape, but I can't afford it all, couldn't do it alone even if I wanted to, and well......there is a limited number of people crazy enough to say "yeah.....let's invite the Bloom's!"

Hard is not knowing if it is me or them.....maybe my kids would be included if I wasn't their mom....Maybe it's me?

Hard is constant motion.......hard is noisy when all you want is quiet.  Right now life is hard.  I know that in a week it will all look better.  A week from now I will have said goodbye to Ohav Shalom, and I will be gearing up to say hello to Early Start.  A week from now I will have a fresh perspective I hope.

My plan is to make time for me to grieve this week as I say goodbye, but not to get bogged down.  I am going to work as hard as possible to keep my spirits up for the boys while inside I feel my heart full and heavy.

I always am aware that there are some who have life much harder.....but today, I am brutally aware that so many have it easier....I just want easier....I really, really wanted it easier today.

Sunday, July 28, 2013

walk a mile

I posted on facebook earlier today how awesome it is to have respite workers for my boys.  Today was our first day with a male respite worker for Matthew, so for right now we have a respite worker for Matthew on Saturday afternoon, a respite worker for David for a little while in the morning on Saturday and a respite worker for Matthew in the afternoon on Sunday.

Trust me, I completely and totally appreciate how amazing this is!  We have waited years since the boys were approved for respite for them to both have a worker.  Even just for a brief time this weekend, when I had time with David alone, I understood that this much time with respite will allow me some 1:1 time or 1:2 time with the boys, and that is a HUGE gift.

That said, a respite worker means opening your house to often a young person.  Frequently an idealistic young person who wants to help a person with special needs.  Of course, it is a blessing to have this person because it gives me some time and the child some time away.  However, it often leads to me feeling judged and taking life a little too personally.  I know that is likely not the intention- there is a huge part of me who knows that- however, it still often feels like I am being judged.

When David's respite worker got home with him today she used the rest room.  We had a flood in the bathroom last night and I used all of the towels to soak up the crazy amount of water that was all over the floor- sure, many people would clean the floor, wash the towels, hang new towels.  I cleaned the floor, washed the towels and tucked the boys in.  I had HUGE intention of hanging new towels, I just forgot.  I then did not use the downstairs bathroom today.  So, when said respite worker was in the bathroom, it occurred to me that she might not have a towel so I asked Matthew to go get one.  Of course, he was not immediately compliant.  So I asked him again.  At this point she was out of the bathroom and her hands appeared dry, so I assumed all was good and I just worked to get Matthew to follow through.  After I asked him again, she piped in that he needed to get the towel because we HAD to have a towel down there.

Ok, what happens if there is no towel?  You get wet hands.  You dry them on a paper towel.  Crisis averted.  Now all that has gone through my head is my level of crazy incompetence.  I am sorry I didn't rehang the towel.  I am sorry I didn't run my ass upstairs to get you a towel, I thought my 12 year old could do it for us both.  But did you HAVE to imply that the lack of a towel was some huge housekeeping failure on my part?

I am not one to toot my own horn, if anything I always feel like I am not doing it well enough.  That said, I am pretty proud of how much I accomplish raising all 3 of my boys alone.  There are babysitters who help, friends who help, and I have my parents who help, but for most of the time it is me and the boys 24/7.  If I am not caring for the boys, I am paying someone to care for them in my absence.  As a single mom, working in the child care industry, you can imagine for the most part I am caring for them!

I had a garage sale this weekend with all 3 in tow.  I went to the grocery store with all 3 in tow.  I went to the car dealership with 2 of them.  Matthew, David and I shopped at Target.  I clean the house, make dinner, do the bedtime routine, all on my own each day.

At times this means I yell because I am tired.  At times this means I don't have the patience I wish I had.  But for the most part I think I am doing it all ok, or at least as well as most would be able to accomplish.  Our good times are great, and our challenging times are challenging, but I hope at the end of it all I can look back and say I was a good mom, and the boys will tell people that their mom was a good mom.

I will work hard to always rehang the towel.  I will do my best to say everything with a smile and a song in my voice.  However, I also am not Mary Poppins, and I don't have a Mary Poppins who lives in my home!

Wednesday, July 17, 2013

Dreams come true at the pool

As we got to the pool tonight, there were so many strikes against us.....

  • I had told the boys to each grab their towel and David forgot his and I didn't notice
  • As we walked in we didnt see any familiar faces, usually this makes it tough for Jacob to want to go in the water
  • David had not only forgotten his towel, he forgot his snack as well, and it was over 99 degrees outside, he needed to get wet, but was definitely in a bad mood, and unlikely to want to go in the water
And then, as I get in the pool, Jacob is asking me to cheer up David and low and behold, there is David's summer school teacher- the nicest, most upbeat male teacher, Mr K....he smiles at David who quickly wipes away his tears.....things are looking up.  Mr K engages David in some chatting, and David smiles at him and nods his head to answer his questions.  With time, David begins to whisper his answers.  Mr K swims around with his daughter and every so often chats with David about the tortoise in their classroom and what they had worked on during the day.

As time went on, Jacob, David and I swam into the deeper part of the shallow pool....David is laughing, giggling, we are splashing.  David is loving it!  I kick my feet and David belly laughs.  He asks me to do it again.  He asks me to splash as hard as I can.  I am splashing and splashing and he is getting soaked.  He floats for a while on my back, pushes me underwater, all the while laughing and giggling.  Jacob got hungry and begins to ask for a snack break.  Typically David is only too happy to get out of the water....he looks for any excuse to get out and sunbathe.  David does not want to get out.  He is jumping David style, so it is more of a slide into the pool than a full on jump, but he is going in and out of the water and LOVING IT!

We are in the pool together for over an hour.....I am being splashed, soaked, exhausted from the nonstop water in my face....but I can't stop....David is happy in the pool.  David is giggling and laughing and I could stay like this in this moment with him forever.  Jacob rejoins us and they both are on my back and we are laughing the 3 of us.  Jacob realizes how special this moment is!  He too understands that today is special and will be treasured by us forever.

I know that the warm weather likely is what got David into the pool.,  I notice that the longer he is in the water his body begins to get looser, he never floats, his body is always much tighter than yours or mine, but he allows me to play with him.  He plays back and laughs and giggles, and we are 1 step closer to him one day swimming.

I believe, and always have, that children should be taught 2 things...they should learn to ride a bike and to swim.  For David these 2 things are still elusive, but if the desire is there, we will make progress.  David missed the water play time when he was a baby and a toddler, he hated the water.  I figure he is at about the level of a 3 year old right now in the pool.  I have faith after today that in the right temperature water he will get there.  We will master swimming for the sake of physical safety in a body water if not for the Olympics, and I know we will master bike riding as well!

Sunday, June 30, 2013

Touching Lives

Tonight we went to a ValleyCats baseball game with Matthew and David's baseball league.  Because of their disabilities, Matthew and David cannot play little league, they do not have the focus or ability to do so safely.  However, their different needs has made it hard to find a league that would be inclusive of both of them.

As I have looked around over the years, I could find leagues for children with limited physical abilities, those would be great for David, but no league for a child like Matthew who really wants to "play baseball".  He wants to have the rules enforced, he wants to hit the ball, run the bases and feel like he is playing a real game.  However, due to his distractability and inattention, Matthew required what I could not find, a league with adult support, that kept everyone safe and focused, but where the kids had the fun of playing.

This year I found it......an amazing man named Jim Fitzgerald started a program called Sports are For Everyone, SAFE, (http://www.sportsareforeveryone.org/) in 1992.  We arrived for our first baseball game on a Saturday morning in Clifton Park, NY and I was blown away.  There were over 100 kids playing ball!  There were kids who had been playing for years, kids who had never held a bat before.  There were kids hitting off of tees, and kids hitting pitches.  The Little League players  in Clifton Park volunteered their time to help SAFE be a success.  There was a Little League buddy for each SAFE child who needed 1:1 help, and then there were Little League kids helping the more experienced SAFE kids play a game of baseball.

Each Saturday for the past 2 months we went to baseball.  Every Saturday I drove the boys 30 minutes for an hour of baseball.  Each Saturday, I left my heart full, feeling happy and knowing that I had found what we needed for David, but most importantly for Matthew.  He had a group of kids who he was hanging out with. He had a group of kids who loved sports and he was playing baseball!

On the last Saturday they announced that SAFE was invited to go to a Valley Cats baseball game and be on the field for the National Anthem- this was of course met with begging from Matthew that we HAD to get tickets, so I quickly agreed we would attend.  All day today we watched the weather and I knew it would be a long night if we had to skip the game.  Thankfully, the weather held out, and we met the other SAFE families at the ValleyCats game!

As we arrived at the game, Matthew immediately started asking, when can we eat?  What food can we get? As I reminded him we were going to be there a long time and that we would eat, but it would be a while before we did that, he was getting frustrated.  Luckily, there was a nice gentleman next to him, and Matthew quickly started chatting with him.

Looking at Matthew, there are no signs that he is a child with a disability.  Talking to Matthew, you might get a sense that he is a little delayed, but the true intensity of his limitations is not always obvious.  Matthew did his best to talk baseball with this gentleman, and each time Matthew got a little frustrated with me, as I told him we were waiting a little bit to eat, the gentleman seemed to instinctively distract Matthew.  I couldn't tell if the man knew  that Matthew was delayed, and I worried that the man was going to be frustrated with Matthew's incessant talking, but to be truly honest, my ears were enjoying the break from being Matthew's only audience.

Finally, as the game was drawing to a close, the man asked what the SAFE t-shirts were about, and one of the directors of the program filled him in about SAFE.  The man leaned over to tell me that he would leave tonight having had the gift of time with Matthew.....that he would remember nothing of the game, but that he would remember his time with Matthew.  The gentleman told me that he had just retired and was looking for somewhere to volunteer.  He said that he loved coaching baseball for his own sons, and that he was looking for the right group to become involved with.  As Matthew's mom, it is at times hard to remember the gift that Matthew is to people.  His sense of humor, kindness, and gentle, engaging manner can be so warm to people who just meet Matthew.  He is earnest in his caring for others, and he is truly curious about others.  To know that tonight as I worried about him bothering this man, Matthew was having such a positive impact on a stranger, was exactly what I needed to hear.

To round out the evening, as the ValleyCats game ended, and one of the players was walking down the field, all of the kids were cheering and yelling for him, trying to get his attention and to get his autograph.  For some reason, this player just kept on walking.  The kids, being kids, just kept on yelling for him, trying desperately to get his attention for the ever desired autograph.  Finally, as the player just walked by, Matthew announced, "well he must be death!, Matthew speak for "deaf"".  The entire group of adults around us giggled, and I once again teared up, as I realized the bright spot that Matthew had brought to so many people's night out.

You never know who you will sit next do at a ball game, or whose life you will touch, but I can guarantee you one thing, if you take a second to talk to a stranger, you just might change their life, or at least you will get a little giggle!

Sunday, June 23, 2013

I wish I had a picture

David and I had a moment...actually it was a good 10-15 minutes and I was with him and he was with me, and we were connected and it was awesome!

Many of you may not know David, so I will give a quick David intro, it is the only way for you to understand how amazing our moment was.

David is quiet, and reserved.  If you are not really working hard at it, you could likely go 20-30 minutes with David and he might not say much if anything at all.  He would be doing a puzzle, or happily listening to music or looking at a book, and he would be totally happy, but he would likely be quiet.

At the pool, David is happy to sit on the sides and just relax.  He enjoys watching the kids play, he enjoys hanging out with the grown ups, but he is usually pretty quiet, and is content to be there.  Our town pool has an awesome splash island area where there are buckets that dump water on your head if you stand under them.  David, Jacob and his buddies all spent some time at the splash island area with me today, and Jacob, his friend and I were taking turns figuring out where to stand so that the water dumped hard on our heads.  Eventually David moved closer and closer to the buckets, but was always far enough away that he avoided getting splashed.

After some time, Jacob and his friend walked away, and David and I were hanging out there together.  I took a misstep and ended up under the bucket and when the water splashed down on my head David gave one of the best belly laughs I have ever heard!  He pointed with excitement and giggled that the water had landed on my head!  He laughed and encouraged me to stand under the bucket again.  Of course, to get such a reaction from David, i am happy to stand under anything especially a bucket of water on a 92 degree hot, humid day!

For over 10 minutes, the water would splash on me and he would laugh.  He would giggle and point and excitedly tell me about the water landing on my head.  His eyes were on mine, and mine were on him, and in a crowded pool complex, we were alone....together......laughing and having fun!

With 3 boys, as a single mom, these moments are so important.  All I could think was, why isn't someone taking a picture.  David's eyes are twinkling, we are sharing a moment together, a moment I want to remember, because his belly laugh was that amazing and he was that excited to be with me in that moment.  And then I realized, that is the picture!  I will remember that moment at the park, where I was present, and he was present and we were alone, being splashed by water and laughing together!

Apparently, David is having just a super cute day, because I just looked outside, and he is using a toddler, plastic lawnmower and pretending to mow the lawn and every few steps he stops and pulls on an imaginary cord as if to start the mower......so cute, such a loving, little boy.  To see the best in David, you sometimes have to remember to stop the world and just watch....I am so glad that today I have allowed the world to stop two times to capture these moments.

Sunday, June 16, 2013


Just having lots of random thoughts, and the need to put them all together and hopefully move forward......

1.  Sometimes being a family with children with special needs makes life easier- today we went for a long bike ride, Matthew, Jacob and I.  We were on busy roads, and places that most would not think made sense for neurotypical kids to ride, let alone kids with Matthew's history- but for Matthew it worked.....why?

  •  because his body was in motion- he always does better in motion
  • because he was surrounded by cars moving, his favorite thing
  • because there was no talking just riding
  • because at the end an ice cream was calling his name!
2.  When you just meet my family, please remember, I have been doing this a long time.......so, to the new respite worker, rather than telling me, "when I am here, you can attend to the other kids, I will help David", maybe you should assume that the reason my hair isnt dry and my teeth arent brushed is because David is having a rough day.  Maybe I know how to calm him down after 9 years together, and you should watch my example, rather than doing what your textbooks say should work.
I am more than open to learning from others, and have picked up some awesome tricks from teachers, therapists, friends and babysitters, but David is not in a great spot right now, so what will take me 2 minutes to do with him, and create less stress for all of us, is better than you doing "what you learned in a book".

3.  I wish that I knew which Doctor could help David with his cough/tic/noise he makes at night.  It could be so many things.
  • it could be him fighting the cold the rest of us are fighting, but his ability to cough is limited due to core muscle weakness so the noise he makes to cough doesnt produce enough to get rid of the phlegm.
  • it could be a seizure, although sometimes he does respond to me calling his name, so I dont know if a seizure makes sense
  • it could be a tic, if it is, it has to be exhausting him.  Listening to it hurts and exhausts me
Unfortunately, it comes and goes.  So what doctor do we see?  How do I make sure they see it when he does it?
I video taped him doing it last night, and will take it to his next neurology appointment.  Regardless, it is keep him up all night long, making him exhausted and therfore impacting his learning/coping skills.

4.  I don't know how to tell Matthew he has no friends.....the poor kid is under the impression that the world is his friend.  He has planned a huge party for "big kids only" and yet, there is no one to invite.......For the most part, I am a "tell it like it is" kind of mom, this is one thing that is too hard for me to tell......it is the part of being Matthew's mom that is the hardest.  Harder than the tantrums.  Harder than the mood disorder.  Harder than the all of the other challenges.  Childhood should be easy. It is about friends, kickball, playing etc......my boy needs a friend.  

5.  We are coming to the end of a great school year, only to be full of anxiety of transitions.  Matthew wasted half a year in a horrible school placement.  When will I know if he gets to go back to the same teacher for summer school and the fall?  He needs her.  Ok, let's be real.....I need her!  She is a teammate for me.  She is passionate about helping him to be the best matthew he can be.  I hate change.  He hates change....he deserves a year with a great teacher.
David is changing schools.  This should be fine, as I don't think he is too connected to his current placement, but it is just another upcoming period of me training the new person about David, who doesnt say much, and takes years to understand.

Wednesday, June 5, 2013

I hate the mania

The mania has started....I am hoping it is just a reaction to a decrease in medication and that Matthew will stabilize soon.  I am so full of hope.  The doctor is trying to get him off of seraquel which is a medication that can have some negative side effects and is not known to have helped Matthew much in the past.  That said, we have been decreasing his dosage very, very slowly.  His last decrease was on Friday and on Sunday he had a large tantrum.

I assumed that I might have been the cause of the tantrum.  He wanted to cut tomatoes at the food pantry and I was afraid he was going to cut himself.  They were cherry tomatoes and a large knife and while I tried to coach him through the experience it just was too dangerous between the way he was holding the knife and the slipperiness of the tomato.

He wanted a smaller knife, I was trying to watch David and Jacob and Matthew and we were in the middle of cooking for lots of people.  There were many jobs he could do, and a smaller knife, or really, any knife just wasn't making me comfortable because he wasn't focused.  Sure, had I been in awesome mom mode, I could have done it differently.  However, I was in survival mom mode, and so I worked with him for a few minutes and finally said we would try again at home to learn to cut the tomatos.  He then snuck off to the supply closet and came back with a big knife, and I told him that this was unacceptable.  This led to a long, loud tantrum.

I hoped that it was just a bump in the road.  I figured it was a response to my not so awesome parenting. 

Today I got a call from school that he had been in the quiet room for almost an hour....he had not calmed down and could not ride the bus home and so I needed to come and get him.  He was calm by the time I got there and had basically exhausted himself.  He did fairly well coming back to work with me and just spending time alone.  Things were ok until right before bed, when he got that odd intonation to his voice, the look on his face and the sing song voice.....

i don't know if I hate it because it scares me, or the tone irritates me, or because it is the beginning of what usually becomes intense behaviors.  i do know that I hate it.....I hate that he becomes someone else, he goes somewhere else and it is intense.  I do know that as a parent it is hard to see your child disappear before your eyes. 

I am hoping this is a blip on our radar.  That the tantrums have ended the mania and that tomorrow is a new day and it is all better.  I do know that we have been in a good place for a while.  We have enjoyed bike rides, family time, he has been drumming a lot....things have been good.  I have the inner strength to get through a blip.  I don't want to ......but I will love and support him through it.....I will do my part, if you will do your part and pray that this is a short ride on the roller coaster.  Pray that there aren't too many big ups and downs.

I hate bipolar disorder......with all of my being I hate it!

Saturday, May 25, 2013

A mom tantrum

This morning was not one of our best mornings.  Every night before I go to bed, I leave out 2 bowls of cereal, one for Matthew and one for David.  They are up at the crack of dawn and if I leave them out cereal they usually let me sleep until 7.  However, some mornings the cereal is not enough.  Today was one of those mornings.

Today Matthew ate both bowls of cereal, and apparently was still hungry.  In his apparently hungry state, he decided that it would be wise to eat a jar of tomato sauce.  A JAR of tomato sauce.  A LARGE JAR of tomato sauce.  The jar of tomato sauce that I was going to use for pasta tonight. 

Is this healthy? no.  Is this a crisis? no.  Did I react with any even a slight modicum of appropriate? NOPE!  See it was early....and it isn't like he ate it neatly and put it all away.....there was tomato sauce all over the kitchen.  What does a mom do when she walks downstairs to a kitchen covered in tomato sauce?  She throws the jar of course!  What happens when you throw a jar of tomato sauce?  The top comes off the container and sprays tomato sauce everywhere that there was not tomato sauce already.

What happens when a mom throws a jar of tomato sauce and makes a huge mess?  Often, this mom at least,  begins to yell like a crazy person.  Sure, I am the grown up.  Sure, I should know better than to throw things.  Sure, I have now made a mess....but in my angry state, common sense and understanding don't exist....so now I had to find a way to remind the boys why the kitchen covered in tomato sauce was their fault!

Jacob....you had me up all night because you were kicking me in the back and knocking me out of my bed so I am tired.
Matthew....you woke me up early down here banging around
David......yesterday you ate a ton of jelly so there was no jelly in the house.....(I am not sure how that connected to me being angry today, but I had to come up with something)

As I yelled and carried on, David looked at me and shared the saddest statement of his life to date.....in his quiet little voice he told me, "sometimes I don't like it here".  Six words that brought me back to reality.  Six words that I had to agree with.  Sometimes I don't like it here.  Sometimes I hate when our mornings start like this.  Sometimes I hate when our bedtimes end with fighting.  Sometimes I want it all to be happy all of the time, and I hate when we struggle.  Sometimes I have to remember what is important.  Tomato sauce is not important.  Tomato sauce all over the kitchen could actually have been funny, if I wasn't so busy overreacting.

To know David is to know that he is a boy of very few words.  These 6 words may have been the most important thing he ever said to me.  I am just so thankful that I was able to hear him and that I listened.  This was David telling me he needed more mommy time.  This was David telling me that he needs me.  This was David reminding me to stop sweating the small stuff.

In that moment I decided that I had to adjust my priorities.  David and I needed a date.  Sure, I had to go to work today, but I needed to make time for my boy.  I had to heal our rotten morning.  I decided that I would go to school and surprise him in the afternoon and take him on a date.  I called his teacher to let her know that I would be coming in and to make sure that I could spend the last 30 minutes of the day at school with David.  I also asked her to give him some TLC to make up for our crazy pasta sauce morning.

After school I had a chance to talk to David on our date.  I told him that I was so happy that he told me that he didn't alway like it at home.  I needed him to know that everyone feels that way sometimes.  I also told him that I was so happy that he had said that this morning. 

I told him that we would have more dates.  I told him that I knew that he needed that.  I know he needs quiet, and our house is far from quiet.  He needs to be 1:1 so that he can have time to talk, time to share and time to connect.  Our two hours together today did more than make up for our morning.  It gave me time to let David know that I was listening.  It gave me time to feel the love of David and to spend time just hearing him.  He picked out pancakes for dinner.  We wandered Walmart together.  We drove and listened to the radio and we just had time together.

Sure, pasta sauce all over the kitchen is a crappy way to start the morning, but I will take a kitchen covered in pasta sauce any day if it ends with me remembering what is important.  No child in this world can get too much 1:1 time with an adult they love.  Children in single parent homes especially can never get too much time alone with their mom or dad. My boys need time together as a family, they need time together just the three of them to play and laugh, and then they need time alone with me. 

I don't want another pasta sauce fiasco, and I hope that I learned my lesson today....the 6 words from David were huge, but they were the reminder I needed to slow down and focus on the important things in life, and to let David know that we can always fix things if we work together as a team.  The smile I got when I surprised him at school is just the reminder I needed that my boys are my world and sometimes you have to take time together to reconnect, to bond and to simply enjoy the quiet.

An amazing performance

With all that goes on in life, I sometimes forget to say that I am lucky.  I often feel it, and remember to count my blessings, but I don't always remember to say it out loud.  Here is the post that defines so many of the reasons I am lucky:
1.  My boys can all talk- if they are in pain, or happy or need something they can all tell me.  Even David, who has taken a long time to get to this point, I now know that if he is hungry or thirsty or needs something, he can let me know.
2.  My boys all have control of their bodies- so many children with CP or other disabilities are locked inside their bodies which they cannot completely control.  My boys struggle with motor skills, but they can all throw a ball, and control their gross and fine motor movements.
3.  My boys and I are supported by an amazing group of people, from family to friends and our community, we are loved and supported.  This is not the case for everyone who is raising children with special needs, but it makes our journey so much more full of joy.
4.  We share a lot of laughs at home together.  Sure, all families have struggles, but as long as there are giggles that seperate the struggles, then life is worth living.  The other night Matthew was cracking up and telling me that Jacob was being fresh......Matthew's giggle made me giggle and then we laughed together the pure laughter of a family.  The sound that makes the hard times easier.  The laughter that bonds you together.

On Thursday Matthew had a talent show at his school.  It was at this show that I was reminded that I am a lucky, lucky mom.  In his school there are approximately 55 children.  Each of these children struggles with developmental or behavioral challenges that are significant enough to require them to be in a class with only 4-6 other children.  Each of these classrooms has at least 3 if not 4 adult staff members.  These are children who face significant struggles.  Children who are not being instructed in their school districts because their needs are too significant.

As I looked around the room, the level of disabilities was intense- there were so many children who needed so much support and yet for these children it was talent show day.  It was their day to shine.  It was their day to sing, to tell jokes, to play musical instruments, it was their day.

The first child got up on stage and was playing a classical song on his violin.  It was amazing, my thought was that he must be a savant.  He appeared to have autism and yet his music was perfect.  He didnt miss a note.  When he finished my dad commented that it was the worlds smallest violin, and that you could hardly see his fingers move.  The boys father turned to my dad and with pride told him that it was a toy violin, his son pressed a button on the violin and it played the music!  For all of us in the audience, it didn't matter- the guts it took to get on stage, to stand in front of an audience, was amazing!  The presence of this child and his pride that he had played violin was phenomenal.  The fact that it was a toy violin did not take away from his moment in the spotlight, it made his moment more special.

From this boy, to the 2 boys who read jokes to the audience and made the audience laugh, to the boy who got on stage to dance and moved to the beat, to the girls who sang about butterflies each act was incredible.  For so many of these children, the success was simply in getting on stage.  The success was in doing something alone in front of an audience.  The success was in being in the spotlight.

Throughout the show what amazed me was that the entire school listened and appreciated each child's performance.  I have been to so many performances where the audience talks through the show, and you can hardly hear the person on stage.  I have seen parents and typical children ignore the person on stage.  To see this group of children cheer for each other, listen to each other, and respect each other was truly seeing an amazing support of community.  At this school the children all struggle, so no one is seen as different because they struggle.  Each child is cheered for their successes, rather than knocked down for their failures.

I will be forever grateful that I have a video of my son playing drums for a group of kids and adults who hooted and hollered when he was finished.  I will be forever grateful that Matthew's talent was showcased and that his teacher truly was in awe at his skill and cheered for him.  As I watch the adults in the video it reinforces for me that my son is loved, and cherished and treasured at his school.  Tears poured down my face as I watched Matthew shine in his moment.  It is one thing to know that your child is a talented musician, it is another to see other people amazed at your child's talent.

The Questar Boces program has given my son the gift of education, love and a feeling of success that is a right for all children.  For that I am forever grateful!