About Me

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

Sunday, December 30, 2012

When there are no beds at the Psychiatric Hospital

We have been home on vacation this week and we have ridden quite a crazy roller coaster.  At the beginning of break I felt like things were going actually better than they had been going during the school year, however now I am having to face the reality that things can't be qualified as better or worse, but actually just different.

Matthew's behaviors have become more extreme and more concerning:
1.  He stole $19 worth of candy at a store when we were shopping.  Now many have said, "all kids do this"however for Matthew it is different.
** he does not understand that taking things is wrong
** no consequence I have imposed has had an effect on him
** his response to going back to the store and paying for the candy was, "it's ok, they gave me money back".

You can't teach money concepts to a child who doesn't understand it.  To him the $19 was equivalent to the $1 bill he received as change.  It is all made of paper, all green and essentially all the same.  We have talked about money for years, we have spent money together, we have talked about what he can afford and can't afford when he has a certain amount to spend.  He can do this all with anyone, but he doesn't see a difference between a $3 skateboard toy and a $30 skateboard so he does not understand the value of items and he doesn't actually value them differently.

2.  He is threatening his brothers.  This is the worst thing for me as a mom.  It is hard to see Matthew so upset that he starts talking about hitting his brothers.  It is harder still to see his brother so scared.  There is nothing I can do to make it better for them in the moment.  When things got really bad on Saturday night I had a friend come pick up J and D, but that still causes them stress and trauma.  They still were here for the beginning of the intensity and they worry when they leave with a friend about what is happening when they are gone.

3. He stole food at his grandparents house today.  All he has to do is ask for food and he can have something.  Sure, sometimes he is offered just a piece of fruit, but that is still something and if he is hungry, he will eat it.  He took handfuls full of crackers at his grandparents and shoved them in his pockets.  When we found them he screamed, he cried, he yelled, he denied, and he tantrummed.  Finally, the truth came out and he was so upset. 
In many ways I know that for him to have taken food from his grandparents, the problem is beyond his abilities.  It is all he thinks about.  All day and all night he is obsessing about food.
That said, no matter how much you obsess, you can't just take what you want.  You have to ask.  He has to check in with an adult.  Yet in this house with 2 adults who know everything that is going on, he managed to get to the crackers and shove them in his pocket and lay on the couch eating some.
For me it was reassuring that even 2 people cannot always monitor Matthew.  It was also a sad, sad reality.  He is typically on his best behavior at my parents house because he wants to make them happy.  To see that today he couldn't even keep it together at their house says things are getting bad quickly.

4.  Another one of Matthew's obsessions is cigarettes.  Yesterday Matthew was at Target with his respite provider and he said he had to go to the bathroom.  He went into the bathroom and apparently found someone with a cigarette in their mouth.  Apparently while the man was using the urinal Matthew told him he shouldn't smoke.  You can imagine how well this went over, especially given that this man was not totally stable himself.  The many yelled at Matthew and Matthew quickly ran from the bathroom.
This raises more issues- he is an 11 year old boy, he has to be able to use the boys bathroom.  However, in the boys bathroom there is no one to monitor him and he cannot take care of himself.  In this case, how is he safe?  He isn't.  And again, with the respite staff it was just 1:1, there were no other kids to take care of and yet he still struggled. 

I decided after the tantrum Friday, Saturday and today that Matthew is not safe at home.  This is the hardest decision a parent of a child has to make.  There is no line in the sand that says, "yep, this is when your child needs to be hospitalized".  It is a gut feeling.  It is the feeling for me that my other boys are struggling too much.  It is Jacob's need to not leave my side.  It is Jacob crying, and David getting quieter.  It is Jacob chewing on his sleeves, and David picking his fingers.  It is my own feeling that without help we may not get through the night without a tantrum.

So I worked up my nerve and I called 4 Winds hospital.  I was ready to take Matthew tonight.  We need help, my boy is screaming for help......and there are no beds.....there may be a bed tomorrow, but there may not.  Who knows how long it will take until there is a bed?  How long do we wait? 

Are we safe to wait?  I will make us safe....I will call for help.  I will set up playdates for the younger boys.  I will schedule breaks and we will do our best.  But, if you needed any other kind of medical help, you would go to the ER and there would be help.  There is no ER to go to.  There is no help.  Our system is broken, when a little 11 year old boy is in need of help and there is simply no help for him!

I am sharing our story because we have to have a change.  Mental health needs have got to become a priority for our country.  My son did nothing wrong to deserve his struggles, and on the right meds he may be healthier.  If any of you, know anyone, or know someone who knows someone, please speak up.  We have to make caring for those with mental health needs a focus so more parents can hit bottom, and make that call to the psyciatric hospital and get their child help, rather than coming home and worrying how many days, weeks, or months it will be before a bed is available.

Thursday, December 27, 2012

Brag on Jacob

Jacob is growing up before my eyes!  I will always believe that Jacob is an old soul in a youthful body.  He can break dance and jive like no other, but his knowledge and understanding of people is deeper than his 6 years.

Over the past few days of vacation there have been numerous times where Jacob has shown his understanding and love for his brothers.  I knew over a year ago, when Jacob asked his speech therapist why David didn't talk much, that Jacob was beginning to understand that there was something different about his brothers.  What I didnt expect was that he would embrace their differences and so effortlessly account for them in his day to day life.

Just a few of the recent times where Jacob has been so much wiser than his 6 years:
1.  Tonight we were writing thank you notes and the boys were drawing pictures on the front of the notes.  David started immediately "scribbling" and seemed frustrated.  Jacob quickly asked David what he wanted to draw  and with each question David would shake his head.  He didn't want to draw a dog, or a car, or a house.  Finally, Jacob said, I'll dot you a rainbow and then you can trace it.

Without me telling him or David saying anything, Jacob realized that David was not able to "draw" like he was and while most of the time it would not bother David, today it was upsetting him.  By Jacob outlining a rainbow for David, David could trace it and feel success and the love of his brother.

As he was tracing the rainbow, David said he needed red.  Jacob scurried off to find a red and asked if David wanted a red crayon or a red marker.  David asked for a marker but when Jacob couldn't find one he brought up a red crayon.  Jacob told David to promise not to break the crayon, and handed it to David.  David promptly took the crayon and broke off the tip.  Jacob looked at David's face, and rather than being angry he just said, " well I guess I have 2 pieces now"

He would have been within his rights to be angry, it would have been understandable, but Jacob understands David gets frustrated, he accepts David for who he is and to him it seemed to be more important that we were coloring as a family.

2.  Matthew is up and down like a yo yo right now.  His mood is changing very quickly.  Jacob, like all little brothers, loves his big brother with all of his heart, but in an instant he can become overwhelmed by Matthew.  He seems to be able to read when matthew is calm, and Jacob takes those moments to play with Matthew, to rough house and to giggle and laugh.  They are building an important bond.  Whenever Matthew is able, Jacob is the first one in the house to get together with him and goof around, and when Matthew is not able to play, Jacob is ok waiting.  He accepts his big brother for exactly who he is, and appreciates and giggles and laughs when they are playing together.

3.  For Hanukah I gave each of the boys a certificate for a night out with me.  I had a babysitter the other day and an hour before my friends were ready to go out so I explained to Jacob and David that I could take both of them out or I could take one of them now and one of them later.  Jacob quickly said, "let's go together" while David said, " I want to go alone".  As I explained to them that both would get a turn, Jacob quickly suggested that I should go out and that David and he would go out another night.

It was obvious that Jacob was ok staying home with David and the babysitter, and that he was ok not going on a date that night, but that he was not ok staying home without David, so he quickly reminded David that the babysitter had great movies and they dashed off together to pick a movie!  This meant I got an hour to myself, to bask in the love that my 6 year old shows to all of us.

Some may say that Jacob is burdened with eventually caring for his two older siblings on some level.  I choose to say that Jacob is going to become an amazing person as he continues to grow up in our house.  He has learned compassion, understanding and patience at a very young age because he has had to.  He has seen his brother struggle with mental health issues and loves him no matter what- this is more than can be said for many in our society.

He is a 6 year old, but so often he thinks about things in a way that is more generous than many much older.  I am so proud to be his mommy and to see him growing into such an amazing boy!

Sunday, December 16, 2012

I have to write tonight to hopefully find calmness

  As I write my blog, I try to remember that things on the internet are visible to everyone, everywhere.  Since I want to be careful and make sure things are read with the correct intent, I don't like to share challenges with my boys schools until there is a resolution.

This year has been ripe with frustrations since October  with Matthew's new school program.  It just isn't a match.  I could list all of the reasons why it just isn't working, but truly it all comes down to a few main items:
1.  I don't believe he is being educated at a level that makes sense for him.  I think this causes him unnecessary stress, as a lot of the work is at a level that is beyond his reach.
2.  The communication with his team does not work- we don't speak the same language and are not on the same page.   I don't know how to fix this, and at this point I am too tired to continue to try.

On Friday, the day of the shootings in Newton, CT, I was in a meeting with the head of special education discussing what we were going to do for matthew.  I want him moved to another placement, and sadly there is no other placement for him.  That leaves us in quite a quandry, as my only option is to leave him where he is.

I offered that I would leave him where he is, and continue to work towards a peaceful resolution with his current team  if we could do the following:
1.  Ensure that no words of violence are used as vocabulary words.
2.  lower his level of work to the level his previous teachers felt was appropriate and see if that decreases his anxiety
3.  Continue to work towards finding a new placement.

My biggest fear in life is that Matthew will one day hurt someone.  I fear this more than anything else because if Matthew hurts someone else, it will be the biggest tragedy of his life in addition to the life of others.  Matthew is not a violent person at all.  I will say that again, Matthew does not have a violent bone in his body.  However, when Matthew is enraged, he is very aggressive.  Unfortunately, one never knows when he is going to explode and what sets him off one day would not upset him at all the next. 

I have begged, asked and pleaded that words of violence and aggression not be used as vocabulary words for Matthew:
Rifle, huntsmen and prison are a few of the recent vocabulary words that he has been "studying" even after my repeated requests. 

Why he needs to know what any of these words mean I don't understand.  I need to limit his exposure to violence because he already has a tendency towards aggression.  I don't need him reading passages about killing animals.  I don't need him reading passages about hunting with rifles.  I need him to read about peaceful topics.  Or even to read about situations of conflict and resolution so he has a chance to learn how to problem solve.

To be at a meeting to determine what can be done for my son educationally and to learn that nothing can be done was heart wrenching.  To leave that meeting and find out that a young man had shot 26 people truly hurt me to the core.  I feel like I have one chance in the world to make Matthew a productive member of society.

He came to me with a huge stack of things working against him- his IQ is very low, he had been exposed to alcohol prenatally, and the social history of his birth father is questionable.  Given all that is working against him, I have worked diligently to create success for Matthew.

There have been many incidents that have taken place inside the walls of my house that no one will ever know about.  You likely would find them hard to believe if you only know Matthew on the surface.   David and Jacob both know where to go when Matthew is angry and how to stay calm.  Jacob especially is a genius at helping deescalate the situation when Matthew is angry.  Until you have lived with a child with mental illness you will never, ever know what that is like.

Each and every time I have gotten to the point that i have decided Matthew needed help, I have called the local pychiatric hospital and been  told there were no beds.  When I found an emergency respite program and have called them, I have been told there is no bed.  We have waited a month for both of these programs to have beds open up.  A month in and out of crisis.  A month doing the best we can.  A month, 30 days, 30 nights, while he cycles!  And many of the times we have gotten to the point where a bed has become available and we have come through the crisis and are no longer in need of the bed.  I am exhausted, I need a break, but I will not use a crisis respite bed or a psychiatric hospital bed for me to rejuvenate.  That is not the purpose of those beds.  Additionally, Matthew needs to know that he belongs in our house.  He is a member of our family, and the only time he cannot be at home is when he is unsafe, so I will not take advantage of a bed that becomes available after 30 days if we are no longer in crisis.

Think of this in terms of any other illness or problem-
your heater breaks and no one can fix it for 30 days, it is mid winter.....do you wait and freeze?
your appendix is bursting- no surgeon can fix it for 30 days.....do you wait?
you are being assaulted by a stranger, the police can't come for 30 days....do you wait?

Of course you don't wait, you would be ridiculous for waiting!  You would never even consider waiting.  But when my child is an emotional wreck.  When we can't get in to see his psychiatrist, and my other boys are feeling unsafe, we wait. And we wait.  And we wait.  And I do my best, and I lean on my community.  And I take full advantage of the 3 hours of respite I get each week and hold David and Jacob a little closer and have some extra fun and rebuild our relationship for those 3 hours.

Tonight at the grocery store Mathew exploded.  The explosion was about food, of course, and the details are unimportant.  He laid on the floor of the grocery store kicking and screaming.  He begged another woman to take him home.   He laid back down and kicked and threatened to knock items off of the shelf.  I tried talking calmly.  I tried talking firmly.  I tried getting him to leave, I tried getting him engaged in shopping.  He laid on the ground screaming.

I finally walked with David and Jacob and assumed Matthew would follow.  He followed at a distance and I assumed he would settle down.  He for some reason got upset again and stopped at the deli counter.  This is where I was stopped by 3 staff members of the store to see if everything was ok.  They were wonderful for asking.  But there was no calming Matthew down.  He took off again and I said I was grabbing one more item and then leaving.  I knew that leaving in that moment wouldn't have worked, he wouldn't have left with me.  I hoped that just getting the last item, and giving him a few minutes would allow Matthew the chance to settle.  A staff member did a wonderful job talking to matthew and trying to calm him down.  Misty, at Hannaford, I owe you one!

After  I paid Matthew got in the car and I was seeing stars.  His entire behavior had embarrassed me.  There was no real reason for it.  We had been having a good day.  I don't know what switched for him.  I told him when we got home he would go to his room and think and that was again the beginning of the end.  He went to his room calmly for a while, and then erupted.  He giggled the giggle of someone in a manic phase, he cried, he screamed and he giggled the giggle again.

I went up to his room to talk to him and that is when I found the remains of another bag of chocolate and millions of gold coin wrappers.  The chocolate is for presents that I am giving to the boys teachers, no matter where I hide it he finds it.  It is more important to him than breathing.  The gold coin wrappers I am assuming he has been taking from Sunday school throughout the celebration of Chanukah.  These are gelt wrappers.   This is the 4th time we have cleaned up his room from wrappers and wrappers and wrappers.  Each time I get sick. How can I not protect him from himself?  How can he be so desperate for candy that he will risk so much?  He has vomited twice from eating so much candy, and yet he keeps eating it.  I don't understand, I can't understand.

When you are unable to make good decisions because your IQ is low and you do not see the world through the same lense as the average person, you make bad choices.  Matthew's life is full of bad choices.  The problem is that to teach him good choices requires him to have a person to act as a brain that walks around outside his body.  This is a full time job.  I already have a full time job!

I feel the need to speak loudly on behalf of those with mental illness.  I feel the need to beg the district one more time to understand that when we teach Matthew violent words for vocabulary words we are putting future contacts of his at risk.

There are so many opinions being thrown around on facebook these days about what happened to those poor, innocent children in Newton.  Of course none of them deserved to die.  None of the children of Sandy Hook Elementary deserved to see the ugly reality that they were face to face with on Friday morning.  However, there are other people who need to be remembered.  Adam Lanza had a mother, a father and a brother.  Only they know what life was like with Adam as a child.  Only they will know the private torture of knowing that their brother and son created this tragedy.

The autism community is speaking out with a vengeance that it is unfair to say that Adam had an autism spectrum disorder because this speaks poorly about all of those with autism.  I find that horrendous.  No one should ever be in such a horrible place that they feel the only way out is to kill children.  Whether Adam had autism or not does not give us the reason as to why he did what he did.  If Adam did have autism, that is just a  piece of who he was.  Additionally, if he had a mental illness, that is just a piece of who he was.

Matthew is not defined by his mental illness.  Matthew is a loving, funny, larger than life boy who loves simple things and cheers for everything in life!  He is passionate and funny.  However, he is tortured by mental illness, sometimes more tortured than others.  If our education system does not take this into consideration, we are doing Matthew a disservice.  If our political system does not find some way to manage the guns available to those who may use them unsafely, we are all at risk.

First and foremost though we need to stop spewing hatred and remember that every person has a mother, a father, a sibling and someone that cares about them.  Even  Adam Lanza was someone's grandson, nephew, and friend.

Mental health is as important if not more important that physical health.  We have got to provide support that is immediately available so that I can be sure that Matthew grows up safe so that everyone around him is also guaranteed their safety.

Monday, November 19, 2012

The candy store

I consistently think about my parenting and how it will affect Matthew.  I know that many think I am pretty hard on him.  That maybe I don't allow him enough freedom, that maybe I take things with Matthew too seriously.  I am a strong believer that a parent has to parent each child as an individual.  In my house, this means each child is parented fairly, but also very differently.

A lot of this stems from how I think the boys are perceived by the world at large.  Matthew comes across as much more capable than he actually his.  His IQ puts him at a level of mild mental retardation.  This is a very accurate description of his ability to cope with life, to problem solve and to participate in self care activities.  However, it is not at all how most would describe Matthew.  He is very charismatic, and can carry on conversations, and unless you have a lot of conversations with Matthew, he has enough scripts that it takes a little while for someone to learn that he cycles though a variety of scripts with each person.

This weekend Matthew and his respite worker were faced with a reality that reminded me that it is important to be firm and to continue parenting Matthew with little wiggle room.  Matthew, as we all know, has a food obsession.  He thinks about it, talks about it, lives for food!

This weekend Matthew and his respite worker  were walking through the mall and they went to check out the candy store.  While they were in the store Matthew became very focused on the skittles container.  This is one of those candy stores where all of the candy is in a large bin and you use a spoon to scoop out the  amount of candy you want and put it into  a bag.

Matthew's respite worker was looking around the store while Matthew looked around and Matthew gave the counter man an odd look and a quirky smile and apparently made the man nervous.  Matthew's hands were on the spoon and it appeared that Matthew was putting candy into the spoon and was trying to steal candy. The shop owner came over to Matthew and the  respite worker and told Matthew that he needed to wait in the store, the owner then went to the back, looked at the video and saw that Matthew had not stolen anything and he came back out front and told them they were free to leave the store.

When Matthew and his respite worker came home, Matthew quickly told her to tell me what had happened, which is wonderful.  However, as she told me what had happened, it became very apparent that Matthew was not understanding the gravity of this situation.  He was focused on the fact that I might not make him dinner because we were talking about what had happened.  He was focused on the fact that I might not make him what he wanted for dinner.  No matter how much I tried to refocus him and get him to understand that dinner is not a part of this equation, he could not grasp the gravity of what had happened.

Even as he sat eating the quesidilla he wanted for dinner and I tried to again talk to him about what had happened that the man thought he had stolen candy, I could not get Matthew to understand that stealing is a big deal.  That even if it is just a skittle, it is a really big deal.

Unfortunately for Matthew he has a few things that will always work against him in life:
1.  He is large for his age- while he is only 11, he looks more like 13 or 14, so people relate to him as if he is older and expect more from him.
2.  He is african american, and sadly, in the US, this is still often a reason for people to respond differently.
3.  He communicates well above his level of understanding.  He can look you in the face and talk and talk and you think he is understanding and he truly is just repeating what you have said without internalizing the information or understanding it for himself.

My first thought was why would the respite worker bring Matthew to a candy store.  She knows of his food obsession, it seems like a silly place to bring him.

My second thought was what happens if an 11 year old is accused of stealing?  What is the next step?  How do you convince people  that he is unaware of what he is doing, while teaching him how serious this is?

Thankfully, I also had another thought.  If I don't teach him the risks of this behavior, he will never learn.  Of course he has to go in and out of candy stores.  He has to do this as a young adult so that when he has the freedom as an adult, I have impressed upon him that he cannot steal.  That taking even one piece of candy is stealing.  That touching the candy is wrong.  That looking at the candy too long makes shop owners nervous.

As you are with us and you wonder why in the world I am so strict with Matthew, please realize that I am parenting Matthew so that he is ready to be an adult, to be able to be in the world and not eat himself to death.  So that he doesn't go table to table in a restaurant inappropriately interacting.  So that he understands how you relate with others at a dinner party, at a buffet, at a restaurant etc......  I am parenting the adult that Matthew will become so that he is ready for life in the real world.  I believe he will always need help, but I also believe he will not live with a caretaker with him 24/7, for this reason, he has to know how to live in the world, and I was given 18 years to teach him the skills he will need to do this.  I have 7 short years left, and given that times is short, I ask for your help in teaching him the rules of society so that Matthew is ready to take on the world!

Tuesday, November 13, 2012

update writing what I cannot speak

I am not writing this because I want your sympathy or because I need you to worry about us, but rather I am writing it because I simply can't talk about it all right now.  When I can't talk, I can write, and when I can write I can share what is going on inside my family without feeling judged as much as when I have to explain it to you to get you to understand.

It has been over a year since Matthew has been in a hospital and it is my hope right now that we can keep moving forward.  It has been just under a year since Matthew was in Healy house, a place that allows all of us a 3 week respite, and today I made the call to get him on the waiting list to go back.  Tonight however I realized that my son is struggling more than I had thought.  Tonight I realized that like everything in life there is a cycle to Matthew's ups and downs and we are heading down rather quickly.

It started a few weeks ago, he would get more upset than usual about little things.  He was food hording and obsessing and I thought it was just a phase.  I assumed it would pass.  Then he and I started arguing more....I would say black and he would say white.  I would say up and he would say down.  Then on Thursday he got angry and got a little bit physical with me.  Nothing major, he just threw a toy.  Then we had a fabulous weekend.  I thought for sure things were looking up.  We had a wonderful time with my extended family and I thought the cycle had ended.

On Monday we were home for Veteran's day and things were going so well that I kept Matthew home for the day rather than sending him to the YMCA for a child care program.  Then at around 1:30 things started to plummet.  I went to the car to tke the boys on a  playdate and I told him it was time to come.  He was in the house for a few more minutes and said he was looking for his Ipod.  Turned out he came out to the car with his pockets full of food.  I hadn't locked the lock box because we were leaving.

I told him that he had made a bad choice and he started to kick and hit.  I told him he would sit at the playground and he screamed.  He got out of the car at the playground but then when I was firm and told him to go back, he went back.  I still thought maybe we would be ok.  After the playdate where things went pretty well, we went to the grocery store.  Jacob and David wanted a cookie at the grocery store.  I had the internal mom fight- it wasn't fair that they couldnt have  a cookie, but Matthew had been told he couldnt have one as part of the consequence of putting all of the junk food in his pockets.  I knew giving them a cookie would cause a tantrum, but was it fair to deny the other 2 a cookie?  It was the grocery store routine.  I got them both a cookie and Matthew said he understood, and then out of nowhere his anger took over and he kicked and screamed.  The panic that takes over the other 2 in these moments is so intense.  It is not normal to block your child with a grocery cart so he doesn't hurt your other children.  But for a child with FAS, anger is anger and when he is angry Matthew sees no consequences to his actions.  As quickly as the anger came on, the anger subsided and matthew cried and apologized and it was over.

Today things had gone well in the morning. I thought we were doing well.   I went to pick up Matthew and Jacob from the YMCA after school and there had been an announcement that there was to be a pizza party on Wednesday at the Y.  Matthew doesn't go to the YMCA on Wednesday, Matthew goes to Hebrew school.  As soon as I walked in, I could see he was stewing.  I knew he was upset, and it only took a moment to find out why.  He wanted pizza on Wednesday, he didnt care about hebrew school.  He didnt care about anything.  He wanted pizza and that was all he could see. 

I was firm, I was calm, I was patient.  He had hebrew school, he would have pizza another time.  No, I would not change my mind.  No, he could not stay home from hebrew school for pizza.  We walked to the car and he hit me.  We walked to the car and he kicked my leg and screamed curse words that you would usually hear from a sailor.  We walked to the car and I held Jacob's hand and reassured him.

Finally, after what seemed like forever he got in the car, and after a few moments he cried and cried.  The tears of a person with a mental illness.  The tears of a person who cannot control themselves.  The tears that break a moms heart.  The tears that tell me he needs help.  The psychiatrist is away until Monday.   We have an appointment on Wednesday, but will it be soon enough?  Will the darkness go away as fast as it has come?  He missed last Thanksgiving with us.  Will he be safe enough to be with us this year?  Where is there help?  I hate to go down this dark road again.  I hate to see him struggle with is demons. 

We will be ok, I know that.  I know that mental illness is like any other disease and I will get Matthew the help he needs.   I will keep life consistent for David and Jacob and myself because we deserve that.  I will get Matthew help and stay calm and be patient because that will help him.  I am hoping that we can make it to the appointment with the psychiatrist on Wednesday, that she will make a medication change and he will feel better.  I hate to see him shake with tears, and to know that he hates exploding with rage but at the same time he cannot seem to stop himself.

Sunday, November 4, 2012

The roller coaster of our life

We have had a pretty smooth start to the school year.  All of the boys are doing relatively well. Matthew started in a new school and Jacob has started Kindergarten, so given the major life changes going on, I am happy to say that the past few months have been relatively calm.

Unfortunately, when life is calm I forget all that can go into running our lives when the roller coaster of our lives gathers steam.  I don't know exactly what is going on with Matthew but the last 3 days have been intense.  He is so hyper focused on food right now, it is all he is thinking about, it is keeping him up at night, and overtaking his entire days.  His obsession over food will always be more powerful than my ability to think one step ahead of him and prevent him from wreaking havoc in the house.

As he is getting older he is getting just that much more clever.  He knows the complete and total inventory of every food item in our house and it seems like he waits with baited breath for me to walk away or leave something out or open.  Twice this weekend he has asked for a drink which I have of course allowed, only to find him elbow deep in a container of chocolate or shoving candy in his mouth that I had mistakenly left out.

We made pumpkin bread and he told me that he was going to leave it alone.  He wanted some for school the next day so he would leave it, and no sooner did he say this then I left the kitchen and he devoured and destroyed all that was left.

I try to keep as much of the food like cereal, bread, bagels etc... locked up so that he has limited access to snack type foods.  I never thought we would live like this, but if locking food up ends the fights, it makes sense to lock it up.  However, he checks the locks hundreds of times a day.  If I unlock it to get the bread to make lunch, this weekend he has snuck behind me to find something in the lock box.  It is exhausting.  It has been a while since we have lived like this.  I had actually been debating starting to leave the lock box unlocked because things had gotten so much better, so to go back to life like this is emotionally and physically exhausting.  I have to be one step ahead, but it is one step ahead of someone's mental illness and obsessions.....that is hard to be.

In addition, he is talking about food non stop.  He is talking about food so much that I  am constantly feeling full.  Not because I have eaten, but simply because if you talk about food enough, I am realizing that one becomes consistently not hungry.

I hate seeing my son like this.  I hate seeing him struggle and I hate being so overwhelmed by his struggles.

There are no books that tell me how to wind my way through all of this and to find a path that will guide us all through this successfully.  I constantly think how crazy it is to lock up food, but then again how crazy it is to not lock it up and to instead have constant turmoil.  I have thought and debated about what would happen if we simply had no food that Matthew would crave, but if it isnt one thing it's another.  Sure, he has a pecking order, carbs are at the top, but if we had no carbs he would drink a gallon of milk.  If there was no milk, he would eat dried fruit by the truckload.  If there was no dried fruit, he would eat cheese sticks.   Whatever there is, the obsession is deep.

Hopefully soon the weather will change and the obsession will stop, or he will again find peace.  Hopefully this is a little tiny blip on the radar and we are not entering a dark place.  We have done so well for so long, I am not ready for major struggles again.

Sunday, October 14, 2012


Lucky.....not a word I often think of when I think of our lives.  But Lucky is the only word I have for this weekend.  Lucky for so many reasons!

1.  Jacob and I seem to have moved on from our adoption talks and he seems to be at peace.  His adoption binder is back in the drawer and he no longer wants to sleep with it each night.

2.  Jacob has asked that I make sure to keep his binder safe, but we had the opportunity to talk again about his adoption at midnight on Friday night when it was just him and I and we were snuggling together.  This is the best way to talk about life's worries- maybe not the best time, but certainly while snuggling makes the talk considerably safer.

3.  I had the chance to scrapbook with friends this weekend and I used that time to work on each of the boys adoption books.  While going through Matthew's book I found pictures I had forgotten I had of Matthew's birth mom, and I found the letters she wrote to me.  I had forgotten how beautiful her words were, and how much faith she had in me.  I had forgotten the love she had when she placed him for adoption and gave me the gift of motherhood.  Upon finding her letters I felt like I had been punched in the gut- had I let her down?  Did I keep my part of the deal? Would she be proud of me as his mom?  Adoption means that you are caring for the hopes and dreams of another parent.  It is quite a responsibility, and finding her letters reminded me of my promises to her upon Matthew's adoption.

4.  Jacob had a fabulous playdate with an old friend from preschool, and on Saturday David and I had the day together.  As a single mom with 3 boys, time alone with one child is rare.  To have time with David is an amazing gift.  You get to hear what he is thinking and what he feels.  It was among my best 3 hours in the past month.  I always say that I have to find more time to give each of my boys alone time, and again I am recommitting to this promise.

5.  Today Matthew had a playdate.  He is 11 years old and hasn't had a playdate in 7 years.  That is a long time for a child to go without an invitation to play with another child.  Watching Matthew and his friend I felt like I had been given a parenting gift.  It was awesome to watch Matthew negotiate the intricacies of socializing with a friend, and heart warming to watch his friend spend time with our family.
We went to the YMCA to swim and then went on a hike and the day passed with happiness and ease.  My wish for years was for Matthew to have a friend!  My wish has come true!  It was all that I wanted and more to see him happy and playing with a peer!

6.  I feel like we are part of a great community again.  With my boys, and I think also in part due to who I am as a person, a feeling of belonging comes and goes for me.  Today I was reminded that we are part of a wonderful community.  I will never be a person with a huge number of friends, but I am a person who is blessed to have a community of supporters and people who want to see my family succeed!  For that I am so lucky.

Wednesday, October 10, 2012

the stuff they don't teach you in adoption class 101

I have always had books about people of different skin colors in our house.  As the caucasian mom to 3 children of African American decent, I knew it was important to have skin color be an open topic.  From the time Matthew could sit for a book, I remember reading him the book Brown Sugar Babies!  The book  has beautiful pictures of babies of all different shades of skin color.  I thought that with books like this and an open forum, we would be smooth sailing through a lot of adoption issues that surrounded race.

Over the past year or so it became obvious that no matter how many books we read, skin color was going to play a role in our family dynamic.  Jacob spoke frequently about not liking his brown skin.  It doesn't help that he has bad eczema and so we are often talking about his skin and his sores. It is not a far cry to go from my skin hurts to "I wish I had different skin"!  Each time the topic came up we would stop and look at all that makes his skin beautiful and how all 4 of us have different skin color and how beautiful each color is.

Monday night David picked out the book "The Color of Us" for us to read at bedtime.  It is a great book about a child going for a walk through her neighborhood and noticing all of the different skin tones that make up the people of the neighborhood.  There is a page with hands of all different colors and  Jacob immediately started to try to find the picture of the hand that most closely matched his own.  In turn Matthew, David and I also did the same.

As we were looking at our hands, Jacob asked me to tell him the story of his birthmother.  I have always been open with the boys about their birth stories and so I went ahead and told him his story as I would usually do.  Jacob was placed for adoption by a birthmom and was initially adopted by 2 women who live in Conneticut.  After receiving Jacob's intitial newborn bloodwork back, there was concern that Jacob had sickle cell anemia.  Jacob's adoptive parents did not feel prepared to care for a sick baby.  They lovingly looked for a new adoptive family, and I was beyond ecstatic to welcome Jacob to ours!  David, Matthew and I met with Jacob's first adoptive family at my Aunt and Uncle's house and in December 2006, during Hanukah,  Jacob joined our family.

On Monday night, as Jacob  asked more questions, I got out my bin of all of the adoption paperwork so that I could show him his adoption certificate.  In the box was all of my paperwork, from the notes I made when I was first called about each of the boys, to the signed forms formalizing their adoption.

When I showed Jacob his adoption certificate, he begged me to let him sleep with them that night.  I tried to show him that the adoption certificate is special and therfor not really something to be slept with, but he was persistent. He finally agreed to go to bed under the condition that I formally put his adoption information into his own book, and that I make him  a copy of his adoption certificate that is for sleeping with.

I thought when he woke up in the morning and there was no further discussion of adoption that Jacob had moved forward.  I patted myself on the back for a job well done, and moved on to the next family dilemna.

Tonight, as we were driving home from Temple, Jacob hit me between the eyes with some more powerful questions.  Hard hitting questions.  The kinds of questions that one can only ask in the dark as you are driving.  As the parent you are thankful to have the road to focus on as you answer, and as the child you are thankful to be able to ask these questions without having to look at your mom eye to eye.
It started innocently enough with a statement, "my mom told me that if you are sick you should get some water then run around and then you will feel better."  And then it tumbled into a long list of questions:

" when you adopt someone, it is supposed to be forever, why wasn't it forever"
"can I meet my birthmom?"  "why do I have to wait until I am 18 to meet her?"
"why am I in this family?"  "why didn't they want me forever?"  "can I write to her?"  "can I talk to her?"

I answered as best as I could.  Taking the time to think, but not too much time that he would fear he had upset me.  Pausing to be thoughtful, but answering with certainty so he knew I was being truthful.

Upon arriving home Jacob hurried to get on his pajamas and immediately met me with a piece of paper.  He was ready to write and needed me to be his scribe.  Before writing, I took out his adoption binder, hoping that by showing this to him he would feel secure, ( and maybe I could distract him from the letter he seemed intent on writing).  We looked at his foot prints that were taken in the hospital.  We read through the description of the page that talks about his birthmom- I said how she was tall, 5 feet 9 inches, and we laughed about the fact that she had allergies as he sniffled.

I paused for a few moments and then decided that I had to complete the story for him.  I had to show him the 1 picture I have from his first adoptive family.  I have no pictures for him of his birth mom, but I do have one picture of his brothers from his first adoptive family.  He studied that picture silently, taking it in.

Then he slowly picked up his pencil and started to draw- one person, "is this tall enough?  you said my mom was tall".  Another person, "what was the boy in the pictures name?  Can you write it?".  Then ever so slowly, he drew himself.  He asked me to label each person, one was Jacob, one was his first adoptive mom and the other was his first adoptive brother.  He then had me write the following, "Dear             , I love you, you are the best.  I cannot wait to see you.  I love you forever, and I want to see you soon.  I have a joke for you I will tell you when I see you.  I think you are funny, I will see you soon, with a joke.  From Jacob"

He then tenderly took the paper, looked it over, and put it in the front of his adoption binder, "for when I am ready".  He then grabbed the whole binder, put it under his arm, and turned it over.  On the back was a banana sticker.  He rubbed the sticker and asked me to take it off, saying "I know she loved bananas, even without the sticker".

We went upstairs and I tucked him in, reminding him to be careful of the binder.

I came back down, and reminded myself that the binder is his.  It tells his story, it is the connection he has to his past, and together he and I will find our way through the story of Jacob.  I am here to guide him and fill in whatever pieces I can.  He is the leader as we walk down this path.  My heart is in his hand, and he struggles through making sense of the adult concept of adoption, which often doesn't even make sense to adults.

Thursday, September 20, 2012

The case of the missing alarm clock

I am a night owl, up until at least 12:30 or 1:00 AM each day.  No matter how tired I am at 10 pm, even if I go up to bed, I get a second wind around 10:15 and I am raring to go until 12:30 or 1.  Given my late night hours, you can imagine that getting up in the morning is not at all easy for me.  For this reason I panicked when I decided that Matthew would go to school in a town 30 minutes from our house this year.  I knew this meant that if we overslept and he missed the bus I would have to drive him to school, get the other kids to school and there would be no way for me to do all of that and get myself to work on time.

My plan to ensure we were on time was that I would set 3 alarm clocks each night- one in my bedroom, one in Matthew's bedroom and I would have my phone alarm set to ring.  Each of these alarms would be set to ring at different times, and to make the most obnoxious sounds that they could so as to ensure that I woke up.

This plan worked amazingly well for over 2 weeks.  We were up in time, ready and dressed to make the bus!  Lunches were packed, bags were packed, all was good!

Until today!

Today I woke up and my clock said 8:03, the bus comes at 8:01.  I ran out of my bedroom and noticed all 3 boys were sleeping ( it should be noted that this has not happened on a weekend in FOREVER!).  I ran downstairs shrieking to Matthew to get up and get dressed, I hoped that as I ran downstairs the bus would be there and it would wait for him as he hurried to get clothes on.  No such luck, the bus was gone.

As  I hurried to jump in the shower, I decided I should give the bus company a quick call, maybe they were only a minute or 2 away and could come back. Maybe they would take pity on me and understand how hard it would be to take him the 30 minutes and back.  Maybe just maybe, they too would understand that sometimes the alarm ( or 2 or 3) don't go off.

Thankfully, the bus agreed to meet me at the local high school, and so we proceeded to rush like crazy- pack the lunch, get Matthew his medicine, run out the door- all 3 kids in the car!  Race like mad to the high school. 

Of course we get no further than the end of the driveway before I realize that I am still in my pajamas!  There is no time to go back inside and change, but if you know me at all, you know I NEVER, EVER, EVER leave the house in my pajamas! I never leave the house without a bra!  Never, let me repeat EVER!

Needless to say, we drove fast to the high school, met the bus and rushed back home.  As we pulled into the driveway I realized I had 18 minutes----exactly 18 minutes!!! to get Jacob and David out the door to their bus stop.  In that time I had to pack 2 more lunches, get Jacob breakfast, get their socks and shoes on, and pack their backpacks.  As the boys are moving the speed of paint drying, I quickly realized I had 2 choices.   I could shower and drive them each to school, which won't work because they don't go to the same school, or again leave the house in my pajamas- have I mentioned that I never leave the house in pajamas?  Have I mentioned that at the bus stop where the boys go there are other people?  Have I mentioned that I hate when ANYONE sees me in my pajamas?

We again get everything done, we pile into the car and Jacob announces "mom, you are in your PAJAMAS"!  Does he think I forgot?  He suggests that I put on Matthew's robe which is blue and covered, and I mean covered, in sports symbols- can I just say it would totally clash with my pink jammies!

We drive to the bus stop where I have to get out of the car and walk the kids across the street.....total, complete embarrassment- I ask the mom, who must notice my jammies, if I can leave the boys and go home and shower- thankfully she says "yes"!  I hug and kiss the boys and jog off to take my much needed shower! 

Thankfully by 8:55 I am out of my jammies and by 9:10 I am at work!  I have now fixed the malfunctioning clock in my room, reset Matthew's clock and turned back on my phone alarm which I turned off the wrong way on Wednesday.

Here's hoping to more calm and relaxation tomorrow morning, and that No one, and I mean NO one, sees me in my jammies!

Sunday, September 2, 2012


Life is all about finding success.....the moments of success are happy moments.  They are the moments that often come between the humdrum of regular life and at times they are  the moments that come in between our failures.

At the end of August, it was time to  drop Matthew off at Camp Chazak, a week long sleep away camp for children with special needs. David, Jacob and I then  began our 6 day adventure, just the 3 of us.  Camp Chazak occurs the second to last week in August, which is the week after most camps in New York have ended.  Since I run a summer camp program, this is also the week I am on vacation.  I had no real firm plans for David, Jacob and I , but I knew that this would be a week for us to recharge our batteries, and relax after a busy summer.

After dropping Matthew off at camp, the three of us headed to Yankee Candle Company in Deerfield MA.  This is a fabulous place where children can explore, make their own candles,  and tour through a candy store and a toy store full of little toy figures, games, puzzles and more.  It was as we stood in line to make candles that I realized how quiet it was. David and Jacob each had a chance to figure out what kind of candle they wanted to make, then after making candles, we wandered for 2 hours through the store.  We had time to look around, to touch, to smell, and to check out the cool toys.  We explored the different scents of the candles, we checked out the candy store, and we just were.  We were together enjoying a quiet day, enjoying our time together in a new place.

As we got in the car to head home, there weren't any questions of what is next, what's for dinner, where are we going?  There was no urgency to get on to the next thing.  We drove, I laughed as David rocked out to the hard rock songs on the radio.  I giggled with Jacob as he checked out his new toy.  We drove.  At one point we stopped for ice cream at a homemade ice cream store somewhere between Deerfield and home.  The boys watched ice cream be made.  We shared a taste of each other's ice cream.  There was no arguing over who got what size ice cream.  There was only excitement that we were doing something special, and enjoying our special day together.

The second day together we had a playdate at a local state park.  Again, it was the quiet that struck me.  Quiet does not mean that things are perfect- there is still some whining, after all I am raising children, not perfect humans.  There is still some fighting, especially in the morning and at night when little people are tired.  But the overall feeling of the day is one of happiness, of contentment, and of ease.

I have come to realize that if I am quiet, I will hear the most important things from Jacob and David.  When I ask questions, I get "yes" or "no" answers, but when I am quiet, Jacob especially will start to talk.  On the third day as we were driving, Jacob asked if he was big enough for his head rest to be put on his car seat.  It had been taken off when he was still in a baby seat during a car seat check a few years ago, but now he is older and I said it would make sense and we could put it back on.  Jacob is a thinker, so I assumed that he had been thinking about it and just wanted his seat to look the same as mine.

When we got home, Jacob remembered wanting the head rest put on his seat and made sure that I got it down from the garage and he put it on his car seat himself.  The next day as we got in the car, Jacob asked if I knew why he had wanted the headrest put on.  I said no, and thought he would just be more comfortable.  He said no, he was tired of Matthew touching his head in the car, and that this headrest might help Matthew stop.

As usual with Jacob, I was amazed at his thoughtfulness in thinking through the problem.  Most of the time we are in the car Matthew does something to bother Jacob, often he touches his head.  David has always rubbed Jacob's head as a way to comfort himself , he has done this since Jacob was a tiny baby.  Jacob has always accepted this, and seems to know intuitively that this simple act calms David. 

I am sure that Matthew wants to rub Jacob's head to "fit in", and not out of cruelty, however, Jacob has asked Matthew to stop this behavior multiple, multiple times, and he refuses to stop. Jacob's desire to put a physical barrier between himself and Matthew was such wonderful problem solving and showed so much thought.  His ability to talk to me about this and to let me know that this is something he thinks about what important.

Throughout the 3 more days that Matthew was at camp, there were many times that Jacob would point out that it was quiet, or nice in our family, or as he would say, a good family of 3.  I know that Jacob struggles with his emotions surrounding his feelings for Matthew.  After all, Matthew is Jacob's older brother, and like any little brother, Jacob does look up to Matthew.  However, Jacob also is realizing that having Matthew in our family at times presents challenges.  Life is louder, more unpredictable, often repetitive and at times explosive when Matthew is with us.

During my second week of vacation, after Matthew had come home from Camp Chazak, I had the option of sending Matthew back to another camp he had attended this summer or having him with us for family activities.  I knew that I wanted some family days, but I also knew that it was important for all of us that we have some more of these quieter days.  We had been invited to go tubing on Wednesday with one of our family friends.  Tubing is a fabulous activity- you ride down the river on a tube, you go as fast or as slow as the river takes you.  Part of the time is spent chatting and laughing and being together,  and part of the time is spent just enjoying the scene around you.  I made the tough decision that David, Jacob and I would go tubing and Matthew would go to camp.  I hated that it didn't make sense for him to come, but I also hated the idea of having him with us creating a different feeling to the day.  My mom offered to take Matthew to dinner at night so that Matthew also had something special to look forward to, and this seemed to appease Matthew.

David, Jacob and our friends had a fabulous day on the river!  We tubed for over 5.5 hours, we stopped to throw rocks, to catch crayfish and to splash around in the water.  We giggled as we raced our tubes down the water and laughed as I repeatedly got stuck in the trees.  Everyone got along, everyone was happy, and the day was rejuvenating.

Later in the week it was time for our annual trip to Moreau state park with other friends. Again I knew that with Matthew the day would have a different feel.  Not a good or bad feel, but it would be different.  With Matthew I would have been on guard all day- checking to see who he was talking to, playing with, and what he was doing.  Without Matthew, I knew all would get along more easily, and that the play would be more cooperative.  I knew the kids would all play together, build together and enjoy each other's company.  There was a birthday party at camp complete with cupcakes, so it was an easy sell for Matthew to go to camp.

Again, as we were together at the Lake it was obvious that there is a feeling of relaxation.  Sure David was goofy on the way up to the Lake, and he proclaimed himself crazy.  On the way home there was some fighting over video games, but it was really kid stuff.  With Matthew it goes to the next level and there is a non stop nature to the action.

Today as we prepare to end summer we spent the day at the town pool.  This time Matthew came with us, and we had a fantastic day.  The pool is somewhere that Matthew thrives.  He lives for the diving board!  The sensory input calms his body- he can jump off the diving board for hours upon hours and is completely at peace.  When he came over to the little pool he played very happily, and got to be in the big brother role as he swam around Jacob and  they played together.  After being at the pool we drove to my parents house for dinner and Jacob and Matthew sat together in the back laughing as brothers laugh.  They were singing and just being goofy.

Today was a day of success!  I think for our family success is going to be best defined by time spent all together but punctuated with time spent apart.  It is ok for me to decide that some activities are best when Matthew is with us, and other activities are best when Matthew is with another adult doing something that he loves.  Family isn't about being together 100% of the time, but it is about enjoy your time when you are together!

Wednesday, August 15, 2012

This old dog is learning new tricks

Matthew and David have spent many weeks this summer at a brand new camp program that has been created by an organization that works with adults and children with brain damage.  The camp has been created for children on the autism spectrum and also for children with ADHD and other learning challenges.  One of the most interesting parts of this program for me has been learning the techniques that are incorporated in this summer camp.  We had a meeting last week where the parents were taught some of the buzz words that the children are using at camp:
1.  Big deal/Little Deal- so often the children get upset disproportionately to the problem.  Helping a child to clarify whether a problem is a "big deal" or a "little deal" helps them to better monitor their response to the situation.

2.  Ready/Not Ready- helps a child to determine whether they are ready to participate or not ready to participate and check in with their emotions and actions.

3.  Make a Plan- for children on the autism spectrum and with any sort of developmental issues, often their thoughts are scattered, so making a plan gives the child a guide for how to get through a situation.

At camp these techniques are used all day long!  I knew that these techniques would be useful when David started saying "it's a little deal" all on his own in response to a problem.  This helped me to teach him this summer that having a poop accident is a "little deal", but having a poop accident and then sitting on the carpet and not coming to get changed is a "big deal".

We have talked about "ready/not ready" when David is struggling to keep his hands to himself in the car.  "Are you ready to ride in your spot next to Jacob, or are you not ready, and need to move to the back?"  Typically just using these phrases helps David to cue in and move to the next step.

Tonight I had a chance to have a parent meeting with Dr Tim Feeney, one of the directors of the program.  Tim specializes in working with children and adults with Traumatic brain injuries, and has spent time at camp working with all of the children.  I was so excited to meet with Tim because I wanted him to help me see where I went wrong with a problem Matthew had yesterday and get him to help me problem solve for the future.

The short story of the problem is that I wanted to go to Karate class, and I knew it was touch and go as to whether the boys would be able to behave while I took my class.  I prepped them for what "proper behavior" was and what was expected and then said that if they did well we would go out for ice cream afterwards.  Matthew took his IPOD with him, and David and Jacob brought books so I thought we had a good chance of being successful.  Unfortunately, Matthew interrupted class 3 times, and David bothered Jacob throughout the class, so I ended up leaving after only 30 minutes of class rather than the full hour.  Because Jacob had behaved I felt that he had earned his ice cream, however the other 2 had not earned ice cream.  I went to get Jacob a quick cone and Matthew went BALLISTIC!  He was running through the parking lot, threatening to run onto Deleware Avenue, cursing and basically totally out of control.  I tried talking to him about making a plan.  I stayed calm and talked about ready/not ready, but he was having no part of it.  He was angry and simply out of control.

Thankfully, a friend happened to be having ice cream at the same time, and after a while Matthew settled down when she offered to drive him home.  He had a nice ride with her and then came home.  He of course was calm, me not so much anymore.

So I asked Tim where did I go wrong?  What should I have done differently?

Tim first suggested giving Jacob an IOU for ice cream for another day.  I felt like this wasn't fair to Jacob, and Tim continued to brainstorm. 

His next thought was that I could have gone to Stewart's to pick up milk and at the same time gotten Jacob a small ice cream.  He thought this may not have caused as big an upset for Matthew and certainly would have at least kept him off of Deleware Avenue.    He also suggested that I could have gotten Jacob an ice cream at Stewarts and Matthew and David something small, that this would make the point that they had lost the golden prize, but that all was not lost and they could try again for ice cream another day.

I had thought I had done so well because I stayed calm, I used the buzz words, and I didnt make Jacob lose out on his reward because of the other boys behavior.  However in talking with Tim I realized a few things:
1.  Jacob still lost out- how good did the ice cream taste while watching and listening to Matthew's tantrum?
2.  Matthew lost out on a learning opportunity because he was too angry and explosive to learn from what happened
3.  I lost track of the little picture which is that 3 boys lasted 30 minutes while I did something I loved.  Just a year ago 30 minutes wouldn't have been possible.  Sure, they didn't last an hour, and sure I was embarrassed by their behavior, but in reality 30 minutes is still to be celebrated.

One of the best parts of talking to Tim was that he was able to help me put into words the struggle I have with being Matthew's mom at times.  We have had a good summer, lots of good days, however I am often tired of being accosted by Matthew's questions  from the very second I open my eyes until the second he falls asleep. It is an awful lot to hear any other human talk as much as Matthew talks.  Tim said when you are with Matthew it is almost like you are constantly being verbally assaulted.  You cannot predict as the listener what he is going to say, and often the conversations are disjointed and it takes a lot of effort as the listener to stay on task with his conversation.  This is exhausting as the listener.  Tim clarified for me that it is ok to feel exhausted, that everyone who is with Matthew feels this exhaustion.  It is always helpful for me to have my feelings validated, and to have the visual of being verbally accosted for some reason made a lot of sense to me and was able to help me put my emotions into context.

Raising any child or children is a learning process.  Raising children with special needs requires learning because the child does not follow the typical developmental pattern, but the good news is that with each new technique I learn, my parenting toolbox becomes more full, and I am more ready to parent with success.

Saturday, July 28, 2012

can't shake the blues

I have just been recently reminded that horrible, horrible things can happen.  A friend of mine just lost her son to cancer.  He was an amazing, amazing little boy with a contagious laugh.  When Myles smiled the world around him smiled.

Given this reminder, one would think that I would understand the importance of being happy with what I have.  However, over the course of the past week I have been unable to shake my frustration and pure exhaustion.  Jacob has completed an evaluation with a respected educational psychologist and her recommendation is that he be considered for a cotaught classroom for kindergarten.  There is not an obvious explanation except for ADHD as to why Jacob does not appear to be able to learn basic prek concepts such as letter recognition, number recognition, letter sounds, and introductory math concepts, however, Jacob is now five and a half and these basic concepts are just not clicking for him.  He is still struggling to count past 13 and his ability to write his name fluctuates day to day.

I feel overwhelmed with the responsibility for monitoring the education of these 3 children.  I feel left out and like I can't find a group of friends where we belong.  I feel sad because I just wanted one of my children to not need so much extra support.  I know that speech and OT are not a big deal, but once we enter the arena of special education it means that life won't be easy for Jacob.  It means that understanding and learning will always be harder than it needs to be.

I think I am grieving the children I "could have had".  I look at my family and see the children that are created by birth by my brothers, cousins, etc....and I see the children I could have genetically had.  The children who are at the top of their class, for whom learning comes easy.  Sure there are other problems, no one raises children without problems, but the problems are "typical" childhood problems. There is something about parenting a child who is a natural reader, just like their mom, or a fabulous mathematician, just like their dad, that right now I am wishing for.

I know that I will get it back together, and I will fight the good fight.  Right now, though it all just seems like a lot.  The summer is ticking away, and I still have so much to do.
1.  Matthew is starting at a new school, in a new program with so much for me to learn.  I am nervous, but excited, but unsure of how being part of a BOCES program rather than an in district student works.
2.  David achieved almost none of the goals on his IEP last year.  I have to meet with the school to figure out what went wrong, how we can fix this years IEP so it is more appropriate and then monitor him more closely.  David has so much potential, but it has not yet been unlocked.  I need the district to help us unlock his learning style so that we can make sure we maximize his potential this year.
3.  For Jacob, it is about ensuring that he is in the right classroom and monitored so that we decrease his frustration and increase his focus.  His body doesnt seem to do what his brain tells it which makes writing hard.  It seems like he needs a lot of extra effort to learn, but most 5 year old boys don't want to put forth extra effort.

While I am juggling all of this, I am also doing all that needs to be done at work.  It is just an awful lot with a ticking deadline looming.

I know that the fact that I can juggle all of these things is the ultimate gift, I am certainly thankful to be trusted to raise these 3 boys, but at times I get overwhelmed and desire one aspect of parenting to be easier or more typical at least.

Wednesday, July 18, 2012

15q duplication specialist

If you have known the Bloom boys for any length of time, you know that nothing has come super easily.  Both of my older boys went through about five years and many diagnosis before we were able to determine what exactly was the cause of their specific delays and disabilities.  For David it wasn't until we did genetics testing when he was 6 that we determined that he has a duplication on his 15th chromosome.  The good news is that this duplication will not affect his life span or cause him to deteriorate skill wise.  The bad news is that this is a little known duplication, so while it was great that we learned what was wrong, no doctors seemed to have any good answers.....that is until NOW!!!

David and I spent Tuesday and Wednesday in Boston at Massachusetts General Hospital meeting with Dr Thibert who runs the 15Qduplication clinic!  Dr Thibert was wonderful.  He answered my questions, spent time talking with David and made sense of everything.  However, as great as it was to learn from Dr Thibert, it was even better to have time alone with David!

David is the middle child, and compared to Matthew and Jacob, he is very, very quiet.  Actually, compared to most children, David would be qualified as very, very quiet.  As we started driving to Boston Monday night, it was nice to just be with David.  He was funny, and charming.  He had a book full of hotel coupons, so he started the trip looking for hotels for us, he found the Massachusetts portion of the book, and then picked which hotels he liked best.  He would read through which hotels had breakfast and would tell me excitedly why we had to choose those.  He was giddy, and chatty and fabulous to be with!

Then after we stopped for dinner, I made a few calls and finally booked a hotel, David was happy because it had breakfast, and then he helped me find the highway exit where the hotel was located.  As we drove into the parking lot, I wasn't sure it was somewhere I wanted to stay, I don't need the best of the best, but I do prefer to stay in a hotel rather than a motel.  While this was listed as a hotel, it was truly a motel and so as I started to drive out of the parking lot, I heard an amazing voice from the back seat saying, "please don't go, I have to go to bed, I am so tired, don't leave, don't leave".  Well, hotel or motel, when David speaks, I have to listen!   He is a child who uses words very cautiously, so when he says something you know he means it!  We got a hotel room,snuggled in for the night, and had a great night together!  David giggled as he put on pajamas and just seemed to be happy for us to be together.

As we got up in the morning David of course got his pancakes and then we were on the road to see Dr Thibert.  We got stuck in horrendous traffic.  Our appointment was 30 miles from our hotel and it took 2 hours and 15 minutes for us to get to the hospital.  Throughout the entire drive, David just kept telling me how he made the traffic come, and helped me navigate.  When we finally arrived at the doctor's office, David was wonderful while we chatted about him.  The doctor was wonderful.  He listened to the "story of David" and was reassuring as everything I described was similar to so many of the other children he had met. 

After meeting with the doctor, we went to the hospital for a  24 hour EEG.  David and I had talked a lot about what it would be like to get hooked up to the EEG, but he was still nervous.  As the technician came in to hook David up, you could see the tears in his eyes well up, so very sad.  He was a trooper though.  I was amazed when at one point David said, "I want a break".  He is a child who rarely  now tells me he is hungry or thirsty, and struggles to advocate for himself, so to hear that he wanted a break was AMAZING!  I knew we had to honor the request and was amazed at the caring technician who patiently waited as David and I counted to 10 for a break.  She had 29 leads to put on him, and every single time he asked for a break, she obliged and allowed him to be in control of the pace of the procedure.

David and I spent the rest of the day doing puzzles and playing games.  I was so happy when my Aunt came to spend time with us, it can be a LONG day in one room so to have company allowed me to chat with a grown up, and also gave me some time to walk around the hospital, look for some snacks for David, and just take a few moments of time for myself.

Mass General is an incredible hospital!  We have done an overnight EEG at Albany Medical Center 3 times and each time I have left in tears.  The doctors didn't seem to understand David and no one at the hospital took time to get to know David, so when they watched him on the video, the feedback was consistently that he was autistic.  David warms up to people slowly, but once he warms up he enjoys playing games, doing puzzles and being with people.  The entire pediatric staff at Mass General got to know David.  The Life specialists brought him puzzles, and even knew him well enough to know that after his blood was taken that he would love a sponge bob bandaid.  Each of the nurses made sure to spend time with David and loved getting his adorable smile and wave when they entered the room.  Even when the doctors did rounds, it was family centered, so I was an active part of the team rounds, and I was asked my opinion and thoughts as the person who knows David best.  What a wonderful experience.  It is nice to know that there is a hospital that truly puts the needs of parents and children at the forefront of the experience.

As we were packing to leave on Wednesday morning, Dr Thibert came in to tell me about the EEG results.  There is some activity in his temporal lobe which is the speech center that is abnormal, which makes sense because speech and language is a place where David struggles.  David also had some unusual night time brain activity which is affecting his sleep, so the hope is that with improved sleep, his skills will improve.

As we were in the hospital preparing to leave on Wednesday, David wanted to know when Aunt Carol was coming back!  Again, to know David, this is truly amazing!  This means so much to me to know that David loved his time with his Great Aunt.  I promised him that we would see her again soon!

After being discharged, we did a Duck Tour ride- from our hospital room we had spent 2 days watching the duck tour boats, so it only made sense that we HAD to do a duck tour before we left Boston. This was a great special time for David and me to just have a fun experience together.  He seemed to love hearing all about Boston, and enjoyed the entire Duck boat experience.

After the Duck boats it was time to head for home.  Of course, just as we start leaving.....torrential downpour!  From the back seat came the cutest, evilest giggle!  David determined that he is the one who "made it rain!" Every time the rain came and went, the same giggle from the backseat came and a winning smile from the "maker of the rain!"

As we got closer and closer to Albany, David got quiet.  As we got off at the Selkirk exit I looked back and noticed that David looked sad.  I asked if he was ready to see his brothers and again the little tears streamed down his face.  For David and me, these 48 hours alone together were a reminder.....he needs time alone with just me.  It is when his voice is best heard.  It is when the world slows down to a "David pace", and when he gets that little extra snuggle.  I think all children love 1:1 time with a parent, but for a child in a single parent family, this time is that much more important.

This trip to Boston was amazing for so many reasons, but the most important reason was that it was David and mommy time!  Carving out more David and mommy time is so important, and this just reminded me of how a little bit of time, can mean the world to any child (and mom)!

Thursday, June 28, 2012

the balancing act of meeting each child's needs and setting limits

All 3 of my boys are attending a typical day camp this week.  With this there has been a lot of joy- especially for Jacob, this week of camp has been a week of growth- he is loving the songs they are singing, he is gaining independence, and he has so many stories to tell me each night it is amazing!

For David, I was realistic, if he makes it at camp all week it will be something huge to celebrate.  David's energy and abilities fluctuate all day every day.  On one end, David is a calm observer who loves to watch what is going on and quietly participate.  However, when overwhelmed or over excited, the best description of Davis is the Tazmanian Devil.  He can destroy a room in under a minute!  His energy is unmatched and he doesn't respond well to redirection or limit setting when he is busy being Tazmanian Devil like.

I hoped for David that he would enjoy being surrounded by those in a Jewish camp program, that he would enjoy the songs, the art experiences, and would smile and laugh each day.  I knew that it was likely that there would be times that David would struggle, and I expected that I would hear from the camp at some point that David was struggling and that camp was too much for David.  It is now Thursday night, and while I heard from camp today it was because David got overheated and had seizures.  His counselors seem to have really tapped into who David is, and have understood the importance of balancing David's time with the group with some down time.  His senior counselor has truly bonded with David and greets him with enthusiasm each day.  Camp has been more than I could have asked for this week for David and we will end the week knowing we have had success!

For Matthew, the hardest part is that the things he struggles with always border on "typical kid stuff" but there is always that extra social element that matthew does not understand.  It has been a hard week for me trying to balance allowing Matthew to simply be a kid, and holding him to the standard that I think is important.

I have always believed that for every time that Matthew gets away with breaking a rule or doing an inappropriate behavior it is a set back for him.  Matthew takes 100 times longer to learn and follow rules than your average child.  It is work to teach him all of the parts of social interaction.  Given all that goes into me teaching Matthew the rules of social etiquette, I stress to everyone with him what we are working on and how important it is to set limits for Matthew.

Before camp started, I was clear with his counselor that it was important to set boundaries for Matthew on the first day- no hugging of other kids should be allowed, language needed to be appropriate and all rules should be stated clearly.  On the first day of camp Matthew came home and told me that he had taken his shirt off and was laughing- not a major transgression, but if Matthew is allowed to take his shirt off at an inappropriate time, and it is seen as acceptable, he will take his shirt off again, and it may be less appropriate.  He has tried to take his shirt off in the mall before, at  a party, and at a wedding.  Therefor, my response is always quick and clear- shirts stay on unless you are swimming. This was not a major transgression, but was my first cause for concern that the staff was not understanding the importance of limit setting. 

As the first night of camp went on, Matthew shared that he talked to someone's friend on their cell phone, that he was hugging the kids, and that he kissed a counselor.  Again I reiterated to Matthew our basic family rules- no talking to people we don't know, and our bodies stay to ourselves and we do not hug and kiss others who are not family members.  In the morning I shared with the counselor what Matthew had told me, and asked that she please ensure that he is supervised because given his cognitive limitations, Matthew is not like other 10 year olds.  The counselor shared how cute it was that matthew liked a girl, and had a crush but promised to stay on top of it. I completely understand that the staff at any camp is young, and that is often what makes camp so wonderful  It is a wonderful aspect of the camp the boys are attending, as the energy level of the staff is unmatched!  However, the weakness is that there is a limit of life experience, and especially when dealing with children with special needs, this presents problems.

Tonight was the overnight for Matthew's age group at camp, and I have torn myself apart trying to figure out what to do.  Was Matthew appropriate for an overnight?  Would it be good for him?  Would it be good for the rest of the group if he stayed over?  Would he be able to handle an overnight?  After much struggling, I decided that the best choice was a compromise- Matthew could stay late at camp until 8:30 and then I would pick him up.  This gave him the opportunity to participate in the fun of a sleepover, but he would sleep at home thereby giving him supervision and everyone else some "non matthew time". 

When David, Jacob and I went to pick up Matthew, I was so happy with my decision, as it gave me an inside peak into camp.  First and foremost, Jacob is essentially a little "camp mascot" greeted by all of the staff and older kids.  He shined, and loved the limelight.  David was greeted warmly by many staff, and was also greeted by some of the older children.  He loved the attention, and it was great to see him shine.

We arrived at Talent Show time, and Matthew had talents to share!  It was awesome to hear him sing with the music director and to see the campers and staff sing along with him.  It was even more amazing to see him play the camp drum set and watch the staff look at him with awe and amazement as they realized what an incredible talent he has as a drummer.  I also enjoyed seeing the children relate to Matthew.  They offered support and kindness and at times I could see that he was frustrating them.  As the kids were sitting watching the talent show, Matthew was up and moving constantly.  As the other children understood that one act each was the rule of thumb, Matthew was happy to have his own personal talent show singing song after song.

The children were kind but it was obvious to me that Matthew's limitations were clear to the kids.  It was fabulous to see how much kindness the children showed to Matthew, and after he played the drums, it was an amazing mom moment to see the children clap and cheer as they supported his natural drumming ability!

I think I made the right call by having Matthew attend the overnight until 8:30.  I will always be happy that I got to see Matthew at the Talent Show, and it was great to see camp in action.  My concerns about Matthew as a camper were validated as I watched the effort he required for the staff, but I had not given the camp enough credit for how dedicated they were to all of my children.  The staff each showed such care towards Matthew, David and Jacob.  The spirit  of the counselors was incredible and they were a fabulous team of young people.

I am so thankful that my boys have had an opportunity to attend a typical camp program- there is no other experience like it in the world.  I will always have to work on giving Matthew space to be a kid, balanced with ensuring that limits are set so that he continues to learn all of the skills that he lacks.  For tonight though, he left the overnight as the boy who plays drums amazingly well, and to me that is reason to celebrate!

Sunday, June 17, 2012

It Takes a Village

Since I have been looking for a new school for Matthew, I have been focusing on what I expect from a teacher and a school for him, and I have had to answer the question "what am I looking for in the next classroom for Matthew."  As I struggle to put my thoughts into words, I have been able to determine that what I am looking for is somewhere that Matthew can learn the skills that he needs to be a functional member of society.

A few weeks ago we went to the grocery store and as we went up and down the aisles, Matthew stopped us every few minutes to talk to people.  He was gathering information from strangers and accquantances alike about what was in their grocery carts and what everyone was having for dinner.  No matter how often I tried to steer Matthew back on track to us getting our shopping done, he kept stopping and talking to people.  Each person reacted so warmly to Matthew, because he is so engaging and endearing when you just run into him and he asks you his questions.  However, when you are with him for a period of time, it quickly becomes apparent that his question asking is not endearing, it actually makes him vulnerable, and as he gets older it is more and more apparent that this behavior has to stop.

We spent time practicing at home how you greet people and who you should greet when you are out doing errands- not an easy thing to teach at all.  Imagine having to explain why when we are on a walk, I will nod and say hi to people we walk by in the neighborhood, but it is inappropriate to go from saying "hi" to asking all kinds of questions.  I also had to explain that sometimes I will talk to people, who I may not know, but that it is different for me to do this than it is for him to do this.  There are no hard and fast rules about how we communicate as a society, these are things we learn through daily experiences, however Matthew is not learning these skills, and so I am working to teach him them.

Tonight alone, Matthew received some computer games from one neighbor and a jacket, because he had chatted with her recently, and she thought he would like these things that she was getting rid of.  He had an offer of leftover pizza from another neighbor simply because he said the pizza smelled great and commented on how much he LOVES pizza.    He tried to stop to ask a neighbor to play catch, while the neighbor was mowing his lawn and was appalled when I told him this wasn't appropraite because of course the neighbor "loves" to play catch with him!

As we rode our bikes by another family, I reminded Matthew that the rules are that he is not to talk to them, or stare at them as he rides by, but rather he is to ride his bike by so that they can go back to their game of catch.  No sooner had Matthew ridden by this family, then he said loudly, "Mom, I did it!  I didnt stare or talk to them".  Let me say, this was equally as humiliating as when he stops and talks to people, and asks about their eating habits!

It is one of the hardest things I have to do to teach him appropriate habits of human interaction.  These are skills that humans learn through observing those around them.  Unfortunately, matthew is not learning these skills through oberservation, and even worse, he is being reinforced for his inappropriate interactions each and every time people give him things, or offer him some of their pizza simply because it smells good.

I often think that Matthew got the worst combination of disabilities possible.  He is amazingly verbal, but doesn't know how to have an appropriate conversation.  He is engaging with others, but often inappropriately so.  He is endearing and caring about everyone around him, but often because he doesn't separate his caring for others between those he knows and those he doesn't know, he creates situations where he is vulnerable to be taken advantage of.

I am recommitting to working with him to learn the skills necessary to be an appropriate, active participant in society.  I am committing to doing this with patience, love and gentleness to try to help Matthew remain his endearing nature, but conbining that with teaching him who to talk to, when and what topics are appropriate.  I am asking you to please help me in this process.  If Matthew is chatting with you and the topic is inappropriate, let him know and guide him towards an appropriate topic.  It takes a village to raise any child, to raise a child with special needs takes a very special village, but Matthew is filled with love and kindness and I want him to be a successful part of life and to do this he first has to learn to interact appropriately with those he comes in contact with.

Friday, June 8, 2012

pre k graduate

I will never forget the day that I met Matthew, and started my family!  My parents and I went to pick him up from the adoption agency, and as we drove away I had many thoughts:
1.  I had always dreamed that my first son would be named Seth, so I named Matthew Seth, but he didn't look like a Seth, so I had to figure out what his name would be.

2.  I dreamed of the day he would be Bar Mitzvah at Temple Gates of Heaven- since we moved to Delmar, this will not happen, he will be Bar Mitzvah at Beth Emeth, but on his first few hours with me, I dreamed about this wonderful day with my son.

3.  I dreamed that Matthew would graduate from my Nursery School and would dance to the song New York, New York.  One of our pre-k classes does a very cute graduation ceremony each year, and it blends with my personality! After I saw it for the first time, I just envisioned my child graduating from this class.  Well, Matthew needed a special preschool, and so he did not graduate from my school, and the opportunity for New York, New York was missed.  Then I had hopes that this dream would come true for David, but while he graduated from my school, he was in a different class, and he ended up having seizures on the day of his graduation, so while the day was very emotional for me, since he was leaving my school having grown so much, it was not the day I had envisioned.

Today, my dream came true!  I got to be a mom in Lynne and Judy's room, and got to watch my son dance to New York, New York!  He sang the Boa constricter song, he sang about animal crackers, and he danced.  He got his diploma from my Nursery School, and I cried!  This dream has been 11 years in the making, and to have it come true was incredible.

Jacob makes so many of my parenting dreams come true!  He has been turned on to Tae Kwon Do by one of the teachers at my school, and now takes karate 3 times a week and is loving it! 

He has friends, and loves playing with other kids his own age, and I envision playdates, sleepovers and other fabulous rites of passage as Jacob continues to grow up!

When you wait 11 years for a dream to come true, the dream is just that much more amazing!  Today was my day to see my baby graduate, and it was truly so very special!

Tuesday, May 22, 2012

Pity party table of 1

I know that this is a post that I have to write so that I can begin to deal with reality.  I am hoping that by putting my emotions on paper that I can get past the grieving stage and enter the action phase.

Matthew needs to go to a different program for 6th grade- I don't want him to go.  I feel so many different emotions over this.
1.  We moved to Bethlehem for the school district- When Matthew was entering Kindergarten I didn't like the program that Niskayuna was offering Matthew so I sent him to the Hebrew Academy knowing that would only work for 1 year.  Then, as we negotiated for 1st grade for Matthew, Niskayuna wanted Matthew mainstreamed and I again felt passionately that this wasn't appropriate for him, so in February I put our house on the market.  In August, I purchased a house in Delmar, and we moved the last week of August even before my house in Niskayuna had sold because I felt passionately that Matthew needed to be in the Bethlehem school district.  In Bethlehem they had a self contained class where Matthew would be with 12 children who were similar to him. I felt that in a self contained class Matthew would have areas where he would succeed and areas where he would struggle.  I never wanted him to be the child in a mainstream class who would be the lowest functioning socially and academically and I knew if he was mainstreamed that is what would happen, so I packed up the 3 boys, and we moved to Delmar with a purpose and a plan.

2.  While it hasn't always been perfect, I have felt a connection to Glenmont school and the staff who have worked with Matthew.  They supported me when he was first hospitalized at 4 Winds, they trusted me as Matthew's mom,  they understand what it is to be Matthew's mom, and each staff member has found a piece of Matthew to love.  With Matthew being a child in the district, there is always someone with eyes and ears on Matthew- he is a child that is seen when the CSE chairs spend time in the classroom.  He has the opportunity to connect with children and then see them at the YMCA or at the town pool.

3.  He is an "Eagle", the mascot of Bethlehem Central Schools.  They sang a song tonight at his concert about Eagles, and I had tears streaming down my face.  If Matthew goes elsewhere, he won't be an Eagle, he won't actually be an anything......Who will he belong to?  I am looking at a BOCES program for Matthew that is housed in a Niskayuna school- a total ridiculous reality that could only happen in my life- move from Niskayuna, and in 6th grade my child goes physically back to Niskayuna as a BOCES student- where will he be part of a district?  Would he attend the school  halloween party in Niskayuna? the middle school programs in Delmar?  He wouldnt really fit anywhere.

4.  I feel like we are in free fall.  I think that we will land in a safe place, but the in between time is making me so anxious, and my head is spinning.  I want him to stay at Glenmont another year.  I want him to go back to 3rd grade and have these last 2 years back so that I could enjoy them and live more in the moment  while he had a class to be part of.  Should I have had more playdates?  Should he have gone to an out of district placement sooner so that in Middle school he could return back to district?

5.  I feel a little insane to even have these feelings- in December I was looking at residential programs for Matthew, in the past 4 months, he has done so much better that it seems hard to believe that a residential program was truly a reality not so long ago.  He spent from October-December living in the hospital and then at a respite program for 3 weeks because he was so unsafe at home, so looking at a school BOCES program is still a step up from where we were earlier this year, I should be thankful.  And yet, I don't feel thankful, I feel heartbroken.

I want to kick and scream and beg Bethlehem to keep us, to keep Matthew, to make it work.  I am still not sure that I can give up on this idea, but for now, I am planning to visit a BOCES class next week and I am hoping to fall in love with it and maybe if it feels right, then I can move forward more easily.  Today I am stuck with a heavy heart and again just wishing it was easier.