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.