Food obsessions

I have heard from many people over the years that in order to curb Matthew's food obsessions, I need to just ensure that there is no "junk food" in our house.  I have worked hard to limit the amount of junk food because I think it is healthier for everyone involved if it is limited, but most importantly it limits Matthew's obsessions.

The problem is that right now, no matter how hard I am working to limit his food intake, he is becoming more and more creative and obsessed.

I am a single mom who works 9:30-5:30 most days.  This means that by the time I pick the boys up from the YMCA and get home and talk to the babysitter who watches David, it is typically 6:15 at the earliest before I am starting to cook dinner.  At least 4 out of every 5 school nights, this means I am cooking dinner, or taking food from the crock pot, or reheating left overs from 6:15 until 6:45 and we are eating from 6:45 until 7:15.  This leaves the boys a half hour until bed time.

For those nights when things are hard, or it is just too much to get it all together, I have the typical freezer foods of all working moms.  There is frozen pizza, we have had fish sticks from trader joe's, hot dogs, and frozen hamburger patties from trader joe's.  None of these foods make for healthy eating 7 nights a week, and they are not at all what my boys are offered.  But on  a night when there is a lot of homework, or we get home late, or I am simply exhausted, each of these foods beats a meal from McDonalds.

This week however, it is becoming apparent that I can no longer have frozen meals in the house.  Matthew ate an entire frozen pizza and a frozen hamburger patty this morning.  The other day he ate 5 hot dogs.  On top of each of these items, he is eating the cereal I am leaving out for him each morning and whatever left overs he can scavenge from the night before.

We had sherbert in the house because that was what David wanted for his birthday treat.  I discovered yesterday that Matthew had eaten the entire carton. 

When I purchase a treat, like sherbert, for a special occasion, it is always a question of whether I purchase it and serve it once, and then throw it out or whether I purchase it and hope for the best.  The sherbert I kept because I was hoping that David would have a little more another day this week.  That didn't happen.

David also chose to have rolls as part of his birthday dinner.  We had those again the other day with dinner and I threw out the remainder.  Yesterday morning I found a mess of bread crumbs in Matthew's room- he had gone into the garbage and taken out the rolls and eaten them.

This means that even food in the garbage is no longer safe. 
I can't lock up everything.  The dry food items- cereal, juice boxes for school, healthy granola bars, are all locked in a lock box.  There is a lock box that they make for the refrigerator that I recently found, I just have been in denial that it is needed, but I will likely order it tonight.

I feel like I am working so hard to protect Matthew from himself recently.  That may be the hardest part of all of this.  A mentally healthy person cannot predict what a mentally unstable person will do.  I would never eat food from the garbage.  I love food as much as anyone else, but once the food is in the garbage, it is off limits. I would never eat frozen food.  For him it doesn't matter, it is eating the food, not the taste that matters.

He has been tested for Prader-willi syndrome and the test is negative.  I have changed our food intake so that dyes are limited in his diet especially.  His brain is addicted to carbohydrates.  It is his drug of choice.  Unfortunately, I have a family of 3 boys, and carbs are part of living for most people, but especially all children.  My boys will choose fruits, they healthy eating habits.  For Matthew this is not about food, it is about addiction.  It is another part of his mental instability.  It is the insanity he is living with.

For me this is a visible reminder of how much support he needs.  It is a sad reminder of how intense his obsessions are.  It is a reminder that this is a job that is too big for one person.  I have to sleep.  I cannot monitor him all night.  His obsessions to him are more important than sleep, making his desire for food incessant even when he is supposed to be at rest.

looking for help, finding closed doors

After a really rough weekend, I decided last night that I had to contact Healy House today for Matthew.  Healy House is a 21 day respite program for children.  Basically Healy House offers families who care for children with mental health or behavioral issues 21 day break.  The goal is that you will be working to make improvements or changes over that 21 days so that the child can return to a better environment that is more able to help the child succeed.

This can mean that in the 21 days a therapist is being found for the child.  It can mean that the school program is changing, it can mean that the child is adjusting to new medications.  It can mean that the respite will allow the child to return home to new rules and structure.  The goal is that something is changing or being changed over the 21 day respite period to allow for better success once the child returns to the home.

This morning I  called Healy House to find out of there was a bed available for Matthew and I was told that I had to have our medicaid service coordinator do an intake phone call.  I then called our medicaid service coordinator and asked him to call me so that he could get the information from me to call Healy House.  I spoke to the medicaid service and filled him in on the incidents that have been taking place and he then called Healy House.

The staff at Healy House intake were concerned that Matthew would do better with a hospital placement rather than a respite placement, and again we begin the mental health circle.  The hospital feels like there is nothing else they can do, that is why they discharged Matthew a week ago.  Matthew is home and is not succeeding, so I need somewhere for him to go that is safe for him and will help him.  Healy House is good option, but they are not sure that he is a good candidate for their program.  I cannot imagine that the hospital would think it makes sense for him to return there, as they thought that they had done as much as they could with medication.

So now where do we go?
He can't go to the hospital...they do medication adjustments and feel like there is nothing to adjust
He can't stay home, it isn't safe for him and his brothers are struggling with Matthew's outbursts to feel safe.
Healy House is not sure he can go there as they feel he needs a more restrictive, hospital setting.

So where do we go?  What do we do?  Today, to do all of this took me over 4 hours.  How many days do we do this for?  Especially, because at the end of these 4 hours, there are no solutions. There is no plan.  I know no more tonight than I knew this morning.

The only good thing that we have in our favor is that I have a therapist who we are working with now who is in our corner. We have a great medicaid service coordinator who feels my frustration at the system and is very dedicated to helping my boys. 

I am a driven, educated person who is determined to do the best I can for all 3 of my children.  While I am often filled with doubt, I am also determined that I have to look out for the physical, emotional and educational needs of my 3 boys.  I am passionate about my ability to care for my boys and the only thing that is truly important to me is knowing that I can wake up each morning knowing that no matter what happens I am doing the best I can.

What if I didn't have the support I have?  What if I didn't know how to access the system to help my children?  What if I wasn't so driven?  What if..........

Remember, I have fought to access the mental health hospital and we have left there with no support.
I have accessed the police, and they have had no answers.  I have accessed programs for children with special needs, and they have reached the limit of how they can help.  I have accessed community programs, and they have no leads.

Seriously, if you are a family in crisis, there has to be plan.........It should read:
If you are a family in crisis, you should call 111-1111, you will be connected to an operator.  If your child is in need of immediate help, you will be put in immediate touch with agency X.  Agency X will be your support agency.  They will ensure that you find appropriate medical care, psychiatric care and respite care for your child.  Agency X will work with you and respond quickly in an emergency situation.  Agency X will always have an emergency respite option, in response to an emergency situation.

 Agency X will first work to ensure that everyone is physically safe. After ensuring physical safety, they will ensure everyone's emotional safety and finally they will ensure the health and safety of the family as a unit.

You will be discharged from Agency X if and only if your child is emotionally healthy for a period of at least one year.  Staff from Agency X are responsible for ensuring a full system of care for each member of the family who is dealing with a child in crisis.

Just knowing that I could deal with one agency in crisis would help.  Knowing that there is one number to call.  One group of people who would know our story.  One group of people who would respond.  One place to call for help.  That would be a solution!  That would be a success!  That would be a way to help a family in crisis when a child has mental health issues.

It's worse than I thought

Matthew came home from the hospital on Wednesday, January 16.

 On Saturday, January 19, he had a huge tantrum that ended with Jacob, David and I leaving him with his respite worker while he raged and screamed.

On Monday, January January 21, he had a huge tantrum that resulted in our friend taking the other 2 boys with her in a hurry, and me calling the police for help.

On Friday, January 25 he had a tantrum at school that resulted in him going to the quiet room to calm down.

On Friday, January 25 he had a huge tantrum at home that resulted in me calling the police.  In a week's time this is 4 huge tantrums.  Tantrums where there was risk for the others involved.  Tantrums that his brothers witnessed 3 times.  Tantrums that are causing me stress.  Tantrums that I know are scaring him and that makes me so sad.

Yesterday we were going out for David's birthday dinner with my parents.  After I picked up Jacob, Matthew was touching Jacob's head, making Jacob whine- it is one of the things that Matthew does simply to bother Jacob.  When I asked Matthew to stop, he denied that he was doing anything.  I again asked him to stop, he again rubbed his head.  I again asked him to stop rubbing his head, and he again denied doing it.  At my wits end, I told him to get in the car, and told him he had lost the ability to have chocolate milk for dinner.

Why I took away chocolate milk I don't know!  It is not a logical consequence, or a natural consequence, but I was tired of being lied to.  I was tired of the whining and screaming the minute that Matthew and Jacob get together.  I was tired and just wanted to have a nice family dinner and evening.  I didn't realize that taking away chocolate milk would lead to such issues.  In my mind we would still go to dinner, he would have lemonade or something else, and things would be ok.

However, for Matthew it was different.  He started to threaten aggression immediately, and alternately scream that if I gave it back he would stop.  I pulled over and hoped to rationalize.....you can't rationalize with someone who is being irrational. I also couldn't give back the chocolate milk.  He has to know that I am serious and tantrumming will never, ever get him what he wants.  I reminded him he could have lemonade.  I reminded him we were still going out for dinner.  He couldn't pull it together.

I called my parents to ask them to head towards us rather than meeting them at a restaurant.  I then started driving towards home thinking a break would help.  We didnt get more than a half mile, before Jacob was scared to be in the car, and I knew we were unsafe with me driving so I pulled into a church.  At that point I asked Matthew to get out of the car.  He got out, but started punching at Jacob's window and kicking the car.  I hate above all else that he is so threatening towards Jacob.  To punch at Jacob's window is such an unnecessary position of aggression.

Finally, because I wasn't sure if and when he might break the car window, and he wasn't calming down, I called 911 for help.  He was raging and I was scared.  The other  2 boys were panic stricken and nothing I could do would help them.  I cannot promise them it will stop.  I cannot make the screaming stop.  I can promise to do my very best to keep them safe, but I don't truly know how long that will all last for.  All it would have taken last night was him to hit the window just right and it would have broken.  It wouldn't take much.

I was alternating between being panicked that he would hurt his brother, break the car window, or run into the road.  There was no way for me to know what to do to keep all of us safe.  No parent should feel this struggle and this fear.  Especially, because had I known that taking away chocolate milk would have led to this, I never would have taken it away.  Often that gets no response, a little disappointment, but no tantrum. All I wanted him to learn was that he has to treat Jacob better and be truthful, I thought a little disappointment would help him learn that.  I was a mom who made maybe not the best parenting decision, but certainly all of us have made worse ones!

That is the hardest part, you can never ever known what his response will be  or how extreme in any given situation.  We were set up for a great night.  A night to celebrate David turning 9.  A night of fun, presents and hanging with my folks.  That was destroyed for me as the tantrum started.

As 3 police cars arrived, Matthew panicked.  This time he hadn't known I had called and I think he was afraid and surprised by them.  He sat down as they asked, and then they asked that he sit in my car.  I asked them to have him sit elsewhere, as Jacob and David really didn't need more stress, but because he is a minor he could not sit in their car to talk, so he sat in my car.  Again, I hate that Jacob and David have to dig deep to deal with situations that they should not have to cope with.  I hate that they have to see all that they are seeing.

Matthew settled quickly for the police, he assured them that he would be calm and they sent us on our way.  The policeman  who was here the other day asked about the new school and the medications and I said that the medications were a work in progress and he was struggling at school like at home, but seemed to be adjusting.

Upon coming home, the tantrum continued.  Thankfully my parents came to be with the other 2 boys and take them out to dinner.  I stayed home with Matthew while he raged.  Eventually he had some dinner and settled down and went to bed.  He woke up this morning again like life was normal.  I am not there.

This cannot be normal, there has to be better.  I cannot accept that his is our life.  I am going to call Healy house on Monday to see if there is a bed for Matthew.  He can go there for 3 weeks and maybe that will buy us all a little more time for the medications to kick in.  The new psychiatrist seems to be good and has some new ideas, so that might help.

I know, above all else, that at his heart and soul Matthew is  an amazing child who is being challenged by demons.   I know that if he had any other illness i would never turn my back on him, and that his brothers would be affected by any illness he had.  I know that this morning the 3 boys woke up and they were more ready to be together and have a fresh start than I was and that says something about the fact that they are ok.

I know that I love Matthew with my heart, soul and all of my being and if love is enough we will get through this.

This weeks crazy

I spent a good portion of last night rereading my own blog.  It is amazing to read that what was such a big deal only 3 short years ago, would now be  a life I would so quickly welcome back.

Three years ago I was upset that Matthew's IEP stated that he was struggling with friendships in his classroom.  Now I would welcome the opportunity for someone to tell me he had friendships to struggle with.

Three years ago, I was begging for help as he was starting to be "aggressive".  Now I would happily go back to that level of aggression, and we would work through it.  I could totally handle him yelling and screaming and name calling if it would stop at that.

Three years ago he had an amazing teacher and a fabulous team.  They supported me as he went through his first hospitalization in a psychiatric hospital.  They helped me realize that he needed more help than I could offer him at home or that our outpatient psychiatrist could offer him.  As he was hospitalized that first time I had hope that there was help, and I had hope that a hospitalization was the answer.

Now I know that hospitalizations are not really the answer.  They are a respite, they are an opportunity for a medication change, they are a break, but in reality there are only so many medications and it is highly unlikely that Matthew's brain, due to his brain damage from the in utero alcohol, will respond to any medication.

Three years ago I had hope that these little blips on the radar would affect Matthew and me.  I had no understanding of the reality of how these incidents would affect his brothers, how they would affect my entire family or how they would affect those who love us.

When I started this blog, it was a way for me to write what I couldn't talk about.  It is still a way for me to express myself, but it has to be something bigger than that.  It has to be a way for us to access change.  I am reading about more and more families with children like Matthew.  What I am struggling with is that my other 2 children, who also have special needs, are never judged based on their needs.  No one judges David because he is often unable to express himself.  No one judges David when his brain is malfunctioning and he is having seizures.

The world at large encourages me to seek help.  The world at large feels sadness for a child affected by a disability in David's brain.  I often feel lucky that I am not "judged" by Matthew's behavior.  As I am reading more and more blogs, I realize that we are  a very lucky family.  So many family's are treated horribly when they have children with mental illness.  People assume it is due to poor discipline.  They assume it is due to a lack of instruction from parents to the child about how the child should act.

 I challenge anyone who has a thought about how to better parent a child with mental illness to parent one for a month.  You will see that time outs don't work.  That you are walking on egg shells, never quite sure when the bomb will explode.  You will see that what works one day to redirect the child will not work the next.

You will see that you are exhausted.   You will see that there is little help.  You will see that you are powerless, and worse than that, your child is powerless in their illness.  I challenge you to stop judging and start helping.

I am always thankful and will always be thankful that in our moments of stress there are moments of hysterical.  Yesterday I was woken up to Matthew telling me he had used my razor to shave in the shower.  I panicked as to what he could have possibly shaved.  He came out to me and he still had a full head of hair.  He bragged with pride that he had shaved his entire body....yes, you read that right, I said his entire puberty filled body!  And worse, he had used MY razor!

As life gets crazy, I try to remember that there is always time for laughter!  The reality that he shaved his private area has had me laughing for 24 hours, and hopefully will take me through the next challenge.

He has started a new school, and so far I am thrilled with the communication from his teacher.  I need people to be open and honest with me.  She has been very truthful in her communication to me.  She is not pretending that things are perfect, I completely appreciate that as it matches my reality.  She is holding him accountable for his actions even as a new student.  I have hope that this school will work and he seems happy.  I am sad that he is in a class with 4 students and 5 adults, but if this provides him with success, then life for all of us will be easier!

i've made a few decisions

Anyone who knows me well knows that I have always like to read non fiction stories.  As the mom of 3 children with special needs, reading non fiction has always been a good way for me to read stories of people who are living through life's challenges and surviving them.

There is the mom with 3 children on the autistic spectrum.  She is living and thriving.

The mom with 3 children who are blind,  deaf and nonverbal, they are all thriving, and she even found an amazing man to marry her and take on being the father to these 3 girls.

Each of these stories has provided me comfort on hard days.  They have given me a reason to keep going and reminded me that life is full of challenges for all of us.

I have made the decision to be open about our story.  My goal is that this blog is not just a blog for my friends and family, but that maybe it can also be a blog that tells the story of a family who struggle and overcome challenges.  Maybe it can be a blog that helps other families.  Maybe this blog can be the blog that helps those in power realize that our system doesn't work.

We live in a suburb near Albany, NY.  It is a middle to upper middle class area, with a fabulous school district.  Just yesterday, while the police were at the house helping Matthew, I asked how often they get calls like this to help with a child who is out of control.  I was feeling like we had to be a rarity in our area, and I was a touch embarrassed.  To my surprise, the police said they deal with calls like this daily, even multiple times a day.  This is shocking!

What is even more shocking is that in dealing with this multiple times a day, they still have no suggestions.

What we need are more temporary beds for children in crisis.  Beds that are actually available in an emergency.  We need beds in places where doctors can be available to provide medication adjustment.  We need beds where children can stay until children and families are truly stabilized.  We need doctors, along with families,  to be the ones who determine that a child is stable.

We need more respite providers.  Providers who work during the times that families are in need.  Providers who are trained to work with challenging children.  Providers who will commit to these children for a length of time that allows them to build relationships and also feel comfortable that their intense behaviors will not cause the provider to leave.

We need people in our education system who understand the limits to the mental health system.  Who understand that families in crisis need help.  We need those in our education system to have access to information to share with families that is accurate and helpful.

We need psychiatrists who have time to meet with patients and who understand the challenges of children with mental health issues.  We need these psychiatrists to have more than 10 minutes to spend with a family at each visit.  We need these psychiatrists to be a partner with parents in care for the child.  We need them to understand that a mental health illness for a child has a huge impact on all aspects of the family.

The most frustrating thing to a family in crisis is for people to suggest they do X or Y and Z and they waste time doing X, Y and Z only to learn that there is no help available.   We need there to be the same easy access for mental health care as there is for any other illness. 

If your child has epilepsy, you see a neurologist.  If your child has cancer you see an oncologist.  If your child has arthritis, you see a rhuematologist.  While you may have to look for the right "ist" doctor who meets the needs of your family, at least you know that you can find a doctor and the doctor can provide the full course of treatment your child needs.

I am going to ask that anyone who reads this blog forwards it to someone else.   Matthew is an amazingly loving child.  He charms everyone who meets him.  He is not some monster.  He is a child in need, who deserves to have help.  He deserves to have a mom who can find him help and not constantly bang into brick walls.

Autism became a better studied and more well known disorder when people finally stood up and said it was "ENOUGH".  Finally money was ear marked for autism, therapies were tested and now there are many main stream opportunities for children with autism to participate in.  Most school districts have classes that are created for children with autism, that help the children mainstream and work on social skills.

Parkinson's disease became more well known when Michael J Fox was sadly diagnosed with Parkinson's disease.  It takes money to study a medical disorder.  It takes a spokesperson, it takes a voice, to raise awareness.

Unfortunately, most families who are dealing with mental health issues of a child are overwhelmed. They are constantly walking on egg shells.  They are anxious about what will cause the next explosion.  They are balancing life, working hard to ensure that when the child with mental health issues is calm, the other children in the family get some time and attention.

I am lucky.  I have a fabulous family, and an amazing network of friends.  I have found an outlet for my guilt and anxieties in this blog and now I have discovered that people are reading and listening.  What we have to do now is get more people to read and listen. Forward this blog address to someone now who can help us take action.  Maybe you know a psychiatrist.  Maybe you know a mental health worker.  Maybe you know a politician.  We all know somone! Please help not only for Matthew but for all of the other Matthew's out there who do not yet have a voice.

I have made the decision to go public with our story. To go public with our challenges and to put ourselves out for the world to see.  I want to make sure that Matthew gets help now while he still can be helped. I want him to get help before he becomes known for something horrific!  We need to put the resources into helping families now before it is too late and we are just managing the behavior of these children while their lives are wasted in jail.  Jails and prisons are currently filled with men and women with mental health issues and Fetal Alcohol Syndrome among other disorders.  Maybe together we can keep the next generation of people out of jail and prison, if we work together.

you have to pick and choose your battles

There was a time in my life where I could not have imagined anything that could happen within my family that would have me calling the police.

There was a time in my life where I could not imagine calling the police on my own 11 year old child.

There was a time in my life where I could not imagine knowing the name of a police officer who could come to my house and would know my son.

There was a time in my life where if I had to imagine calling the police on my son I would have assumed that would be the worst day of my life.

Sadly, today I learned that calling the police on my son does not make it the worst day of my life.  It sadly was just a blip on the radar.  Kind of like, what is our plan for the day?  We are going to get up, have breakfast, go to a few appointments, come home, play, Matthew will get angry, I will call the police and then we will go to karate.

It is just another thing that is becoming "normalized" for me.  When you are raising a child with mental health issues, this is sadly just something that becomes par for the course. 

Jacob was having a playdate today and as the time for the playdate got closer, Matthew became more and more on edge.  I was hopeful that he would settle in, but as the playdate started, it became clear that this was not going to be the case.  As the little guys started playing first, Matthew started trying to play with them. Jacob quickly got upset and I suggested that Matthew try playing in another room.  He did an awesome job at first, he settled into playing music on the computer and seemed to become calmer.  Then, after being on the computer for a little while, Matthew went upstairs.  He came down carrying a toy that shoots out balls, that I knew  Jacob would not want Matthew using.  I told Matthew he had to put it away. 

That simple sentence was the beginning of the battle.

After that he ranted and raged.  He threw a bottle of lotion down the stairs, he screamed, he punched, he raged.  It got to the point that I was embarrassed to have another family here and I also knew that it was too much for the younger boys to be around, so I asked the other parent to please take her son and my two to her house.  As they were leaving, Matthew was screaming to go with them.

After they left, I tried to give him space but he kept on raging.  He would come close and threaten me, he was so angry and full of rage that it was almost like he couldn't see straight.  This is the problem, my son, in his right mind, is the calmest, gentlest soul.  However, when his rage takes over, he is out of control. 

My biggest fear is that in a rage he will hurt someone and he will have to live with the consequences of that.

As the rage continued, I was at the point that I didn't know what else to do.  I felt like he was too out of control, and I was unable to calm him down by talking to him.  Giving him space hadn't helped the situation.  Finally, after he threw a few shoes at me and tried to throw other things, I called 911 hoping that they could help.  He had taken his emergency medication, which is supposed to help calm him, and it didnt seem to be working and I felt like just another pair of hands, and another voice could help settle down the situation.

The police arrived and I filled them in on what was going on.  They were wonderful.  They listened, they offered no new advice, but mostly just reiterated what I already knew....there is no support in the system.  They could call  the mobile crisis unit, but all they would do would be to come and see a now calm Matthew.  They reiterated to Matthew that the behavior was unacceptable and inappropriate....blah, blah, blah.

As they were doing paperwork I told Matthew he had to clean up the mess that he made and he happily did so.  See, he had returned to a calm state.  For him, it was over, the situation had ended.  He was calm.  Now the problem is, I was NOT calm!  I was sad, I was hurt, I was frustrated.  I had just wanted a playdate.  I wanted time to hang with another mom while our boys played together.

As the police were leaving they commented that they see many calls a week just like ours.  Children with mental health  issues who are struggling and they are frustrated that they have no answers.

The police also suggested that I "choose my battles".  What he doesn't know is that I did choose my battles!  I have decided purposely that I will always hold Matthew to a high standard.  The toy that he wanted was not an appropriate one to play with for many reasons.  It was not his.  It was not a play date toy.  It was not a toy he had asked to use. 

If I don't have a high standard for my son, I am creating a false reality for him.  You see, the world will have a high standard for him.  Regardless of what his limitations are, the world will expect him to play by the rules of his community, therefor, I am expecting the same.  I expect that he will ask before taking.  I expect that he will put things away if they are not his.  I expect that he will always listen to the authority figures in his life.

We are ok.  He is ok.  Likely after today he will again have many good days, that seems to be our current cycle.  It is a matter of me constantly remembering that all of the things that are going on are often not in his control.  Today he was crying for help.  Friday we will see a new psychiatrist.  Hopefully the new Dr will help me to help Matthew.  Hopefully he will have fresh ideas and thoughts so that the good days will become more frequent.

Reality Stinks

I hate the cycle of our life......When Matthew is struggling, really strugling, I am often at my best.  I see my boy in so much pain, and I know that I am the one that has to keep it togethr, so I do.  I may cry for him at night, but I know that he is in pain, and so I have to be his cheerleader and his advocate.

Then when he  is in the hospital, my plate is full.  I have to give my time to the other 2 boys, monitor all that is going on in the hospital, cheerlead for Matthew in the hospital and try to connect with him no matter how he is doing.

As Matthew is being discharged from the hospital I have to worry about his reentry into the family.  Will everyone get along?  Will they all be ok?  Have I given them each time and attention to make the reentry successful? Is school ready for Matthew's return?

Then, after a few days we are back in the groove and life and I crash.  Today I have crashed.  I am mad.  Really, really mad.  Not at anyone in particulr, (unless you are a human who is breathing around me, or someone who is demanding something of me and my time).....
I am mad at our situation.  I am mad at our lives.

I am tired....bone tired.   I am tired of coming downstairs every single morning to the same insanity.  I walk down the steps and matthew either yells to me "I haven't eaten anything yet", which is always, always, always a lie or "can I have breakfast.".  He has ALWAYS, ALWAYS, ALWAYS already eaten.  He has likely already eaten more than any human should eat in a day.  Now it is up to me to determine what he has eaten so that I can determine what else he may need to eat in the morning or for lunch.

The definition of insanity is doing the same thing over and over again when it doesn't work.  I am at the point right now where I could live in my bed just to avoid the first steps down the stairs every single morning.  It is a horrible, horrible start to every single day.

I have tried leaving out food- he eats that and scavenges for more.
i have tried leaving out NO food- he will eat dry pancake mix
I have tried getting up with him- he gets up anywhere between 5 and 7:30- I can't get up that early just to lie in wait for him.
I have tried to get him not to talk to me in the morning- he talks anyways.
I have tried to just not care- I can't figure out how to not care when he is not being honest- I am his mom, I care.

I am tired- I have spent since New Years Eve  Day caring for my son who was in crisis.  Today I have nothing left to give.  I could lay on the floor and tantrum.  I could fall apart right now.  I am a yelling, screaming angry mom today, and I hate myself for that.  I hate yelling when likely they have as little control over themselves as I have over me.  The more I am angry, the more they are fighting.  We are stuck in a bad cycle today.  I am hoping to hit our reset button, and have everyone rest.  I am hoping that will make me less tired and will give me the strength to get through today.

I hate this cycle!  Today I hate this part of our lives.  I know that I will be up for the fight again soon, but for today, I am waving my white flag.

Today's update

I am always happy to say when I have made a mistake or maybe judged something too quickly, and I am very happy to report that Matthew's homecoming has been much smoother than I had anticipated.
The last time I saw him in the hospital, before I picked him up on Wednesday, he had been very, very hyper-alert, and was full of a nervous energy.  He did not seem anywhere near ready to be coming home, nor did he seem ready to want to come home.

There are so many aspects of hospital life that make things easier for Matthew.
1.  In the hospital you know exactly what time you will eat all of your meals and snacks.
2.  There is a menu in the hospital so you can know early in the morning what your meals are going to consist of.
3.  There are a LOT of staff, so you have a lot of people to interact with and there are always new sets of ears to listen to you.

Unfortunately, as a working mom, our dinner time is usually between 6:30-7.  This means that from the time I pick Matthew up until the time we sit down to eat there is a certain amount of anxiety about when we are eating.  Also, unless I can tell him the minute he gets in the car what we are eating, down to the side dishes, there is an anxiety and energy he struggles with about knowing what will be served.

Given life, while I would love to say I can just ensure we eat at a specific time and that I always know what we are going to eat, that is simply not possible.  Additionally, life does not work like that.  Some mornings I may pick something out and plan to make that for dinner but by bedtime I don't want it anymore.  Some days I may get a phone call or one of the boys may need me and dinner will be delayed.  That is life, and my most important job in the world is to ensure that my boys leave my house ready to live life in the real world.

When the boys were reunited on Wednesday, Jacob got immediately in the car and grumbled that he wasn't ready for Matthew yet.  Matthew quickly replied that I could take him back to 4 winds if I wanted too.......yes, my heart broke, but I decided they needed to work this out on their own.  Thankfully, with a little time, they were back to playing together and bickering and then playing again.

I have taken a firm line with Matthew since he came home.  He knows that he has hurt his brothers and that he has to work hard to help them feel safe.  I am not sure how much he understands this, but he is working hard to listen, and is responding when he is asked to take a break.

I would love more than anything in the world to say that his medicine is working and I have my little boy back!  And in a few weeks, I may feel brave enough to say this.  For now, he is on an up and down cycle of about 5 days up and then a really low day.  I am enjoying our good days.  I am hopeful that the new meds will keep the good days coming, and I will keep you posted on our journey!

Without the positive thoughts that you all share, the past week would have been very hard.  To know that there are supporters who are helping to spread the word of our story so that maybe one day mental illness is seen as  the same as any other illness, and we can truly help people rather than ostracize them has kept me going!

Matthew is coming home and a new school

Today's rollercoaster ride had the highest highs and the craziest lows that I have ever had in a 12 hour period.  I spent my morning touring George Washington Academy for Matthew.  The classroom he would be in would have 4 kids, 1 teacher and 3 or 4 aides.  I figure that is way better than our ratios at home or anywhere else he has been!  I loved the teacher, and I liked her description of the classroom.  The classroom is taught at a second grade level which is appropriate for Matthew.  The high of possibly being on a positive track for Matthew felt so good. 

This afternoon however things took a nose dive.  I had a meeting with the Psychiatrist at 4 Winds.  When he arrived he sat down and asked me why we were meeting.   I didnt call the meeting, I got a message that he wanted to meet, so we started off with me pretty confused.  He then went on to describe Matthew's needs and disabilities to me.

"Matthew is a perfect storm.  He is a child with Mental health issues, likely bipolar, significant congitive delays, and Fetal Alcohol syndrome and possible ADHD.  The mental health issues cause mood instability.  The cognitive delays also cause mood instability- he sees something he wants it, he has to have it. (if you have read the "I am a toddler" poem, you will understand Matthew.  If it's mine, it's mine, if it's yours it's mine, if I want it it's mine).  Additionally, the FAS does not allow him to process and learn as other's do.  His ADHD is also there, and also keeps him from learning from his environment"

He continued to say, " Matthew is successful here because of the high level of support we have."  (I was curious about the word "successful"  as just yesterday he was out of control and required thorazine to calm down, but apparently my definition of success is different from theirs.)

When I asked what the continued plan was for Matthew at 4 winds, he said that he was not making any more changes to Matthew's medication.  He has taken away Matthew's prozac, a medicine that was supposed to help with his anxiety and obsessions, and increased his Seraquel, which helps with his mood instability.  Matthew has nothing to help with anxiety at this point and anxiety is what is often the root cause of so many of his outbursts. 

He also has no medication to help with the fact that he is hyperresponsive to everything in his environment.  If  a clock is ticking, Matthew hears it.  If the wind blows, Matthew notices it.  If you walk in a room, he has to talk to you.  If you breathe, he has to listen to you.  Do you know how exhausting that is?  Can you imagine the effort it takes to pay attention to every single solitary thing that happens around you at all times.  Try it for a minute.........see how it feels.  Can you imagine doing it all day?


He continued that Matthew is doing well.  When I reminded him that just the day before he had needed Thorazine, he acknowledged that right now Matthew is not the most challenging patient they have and that he meant that Matthew is doing well by comparison to others.  He also acknowledged that since they know Matthew well, he is easier for them to treat and work with him.    I reminded him that my only focus is Matthew and that no matter how "well he is doing", I am concerned that he is not ready to come home.

Then the therapist dropped them bomb......they are sending Matthew home tomorrow.

I am not ready.  I tried to explain.  He has no school to go to.  I dont know how long it will take to transfer him to the new program, but my hope is Tuesday.
His brothers arent ready.  They are just returning to calm.  It has only been a week. 
I am not ready.  I miss my boy, but the knots in my shoulders are finally going away.  I am just starting to get life back to calm, and then I need to make some changes for when Matthew comes home and I havent had enough time to figure out what changes to make.

I asked for more time.  The therapist thought that maybe because of school he could buy another few days.  He asked, and the psychiatrist said no.  Matthew is coming home tomorrow.

I visited with Matthew, and we had a good visit.  We played UNO and I watched him watch the world around him watching everything.  He made a few jokes as we played and talked about breakfast, lunch and dinner.  He chatted with our friend who had come to the meeting to support me.  I told him I would see him tomorrow.

I cried most of the way home.  I miss him.  I want him home, but I cannot stand living in and out of trauma.  I had to tell the other 2 boys that Matthew was coming home.  I had to prep them.

When Jacob and I got home I made dinner and told Jacob and David that Matthew was coming home tomorrow.  I was calm and I told them that Matthew would be home tomorrow night.  Jacob's first response was, "I'm not ready", and his second comment was "what about the orange juice?  We have to finish the orange juice."

How honest and amazing that Jacob was able to tell me he was not ready.  I love him to death.  I love his honesty and his self assured nature.  I love that he feels safe enough to tell me what he thinks.

Jacob and David have been sleeping in Matthew's bed for the last 2 nights....i know they miss him, although Jacob will tell you it is because Matthew has a cool picture in his room.

I think one of my biggest problems is that I was just beginning to come to terms with Matthew's limits.  In my last post I put so many of my thoughts on paper.  My real sadness thoughts,.....of all the things I was grieving.  I love my oldest son.  It is a fierce, fierce love. 

My ability to come to terms with Matthew's struggles is a distance run, not a sprint.  I just feel like I was making headway and now I have to go back into the trenches.  I am not ready to talk about dinner before we eat breakfast.  I am not ready to be tense again. 

He will come home tomorrow.....I will go get him and we will get back into it.  He and I will find our way together. 

Jacob, David and I have each written the one rule we need Matthew to follow.  I am hoping that this gives the boys some control, and that for Matthew he understands that everything else is a little deal, but that these 3 rules are important.

1.  He cannot tease his brothers at bedtime.
2.  He cannot threaten to hit or kill Jacob
3.  He can't scare Jacob and David.

If I can promise them nothing else, I am hoping that I can promise Jacob and David this much.  If I can work on nothing else with Matthew, I am hoping he and I can work on this.

My family will be strong again.  We will be together and I will again be Matthew's strongest supporter. 

There is  a problem that the system discharges a child from the hospital a day after receiving thorazing due to an outburst.  There is a problem when a child is not really succeeding without a high level of support and the child is sent home to a single mom with 2 other children, and no new supports are added to help the family when the child is still unstable.

There is a problem when our insurance companies are deciding when a child has to leave the hospital rather than a doctor making this decision.  There is also a problem that there are so many kids waiting for beds that no sooner will Matthew be out the door than a new child will be in right behind him.

There are so many problems, and when I am not so knee deep in the middle of crisis, I will be a voice for change.  Until then, please keep sharing and talking about mental health.  There are children who's lives are at risk.  There are children who are suffering unnecessarily and families who are being stressed more than they can bear.  We need respite that works.  Support programs that are adequately staffed, and mental health care that truly ensures that children are safe before being placed back into their families who are ready and waiting with open arms.

The child he was supposed to be

I just read a blog about a little girl who passed away when her dresser fell on her.

I know a wonderful family who lost their amazing 9 year to cancer.

I know a family in our community who lost their daughter to cancer last February.

I know that it can be worse.  I have said this before, and I will always always believe it.

Tonight however, my heart is aching.  It is aching for my memories of the Matthew I knew before he hit bottom.

My Matthew is an amazing drummer......he has played since he was 3 years old and makes music amazingly!  He should be in the middle school band, but he can't focus long enough.  He was going to be in jazz band, actually in my dreams he was going to be the most popular drummer in his school.  But you can't be the most popular drummer if you can't be in the band.

My Matthew loves people.  He loves to talk to people.  I thought he would be a politician.  I thought he would work with people.  I thought he would be on student council.  But he says the same things over and over and over again.  He takes every joke too far to the point of annoyance because for him if it is funny once it is still funny 100 times later.  He can't be on student council, he has not one friend in this world.

My Matthew is such a cutie.  He was supposed to have girls flocking all over him.  He was going to be one of the "cool kids".  Dancing at school dances.  Laughing and dancing at all of the Bar Mitzvahs of his friends.  But he won't have the girls flocking.  He wont be going to school dances.  Sure, he may go to some dances for children with special needs, but this isn't what was in my dreams.  It is not bad or good, it is just different from my dreams.

He was going to have one hell of a Bar Mitzvah!  At the age of 3, I debated taking him to Israel because he was  a very spiritual child.  I have looked forward to his Bar Mitzvah for so many years.  It is time to face reality- he will become a Bar Mitzvah but it will be in a very limited way.  You see, he loves Judaism, but his short term and long term memory are so destroyed that he can't seem to learn to read hebrew.  I thought he could do it by listening to CD's but even that for his favorite songs is causing him challenges now, so I can't imagine that learning hebrew prayers will be easy.

I am dreaming about what else his Bar Mitzvah can look like...I will come up with something because it will be a day that I need to celebrate, but it won't be what I dreamed.

I feel like I am mourning my child.  I feel like I have lost him.  Right now he is so deeply affected by mental illness and getting more and more lost cognitively.  He doesn't mean it.  I know that.  If he could fix it, he would.

Tonight my heart is breaking.  My tears are stuck in my throat.  I cried at Staples.  I cried while the boys ate dinner.  I miss my little boy.  I miss the future he was supposed to have.  I want to have this undone.  I want him back.

On Tuesday I have a meeting with the Pyschiatrist at 4 Winds.  I am so afraid that he is going to tell me it is time to face the reality that not much can be done.  I cannot "face that reality".  I cannot give up on my son.  But I also can't live like we were.  It is calm at our house right now.  We went bowling today, not at all a calm activity, and had a wonderful time.

Everything is calmer with Matthew in the hospital, except for the fact that my heart is breaking.  The little boys have time to have their voices heard.  I have time to think.  There is calm in our day, and right now I would trade it all in to hug my son!

today's update

My brain is functioning best in random thoughts, rather than organized writing.....so here goes:

1.  The Nurse Practitioner at 4 winds talked to matthew's outpatient psychiatrist today.  They agreed to decrease his prozac, as it might be causing him to be agitated.  Curiously, when I called on New Years Eve, before things got really, really bad, and I asked this EXACT question, I was told that there was no need to change meds at that time.

Apparently it is only after your child is restrained by police and 3 adults at school that it becomes apparent that prozac may cause agitation.

2.  Jacob asked if they could have dessert today because "they never get dessert".  I reminded him that sometimes we get dessert, and he said that the wants the dessert that you buy and is there again the next day.  If that didnt break my heart and convince me to buy the boy a carton of ice cream, nothing would!

This child is growing up with a wacky view of the world, but it is his view!  I am walking a fine line between giving him the "normal" things that happen in life,  (ie having ice cream in the house, having our food not locked in a lock box,) and not making life soo much fun that when Matthew comes home the adjustment is rough on Jacob.

3.  To hear Jacob and David both say all morning and all evening how much fun it is when it is the 3 of us makes me so sad and so proud all at the same time.  That they can both recognize their emotions and realize that they should enjoy this time makes me proud.  I hope they are always comfortable telling me when they need a break from the stress of FAS.   I hope that sometime soon we can have a good time together and I can point out how awesome it is to be the 4 of us all together!

4.  I woke up this morning and felt at peace and relaxed.  We had a slow morning around the house, and lazied around before school.  Last summer the head of Matthew's summer program described Matthew as being a constant verbal attack on a person.  I had forgotten how true this statement is.  Even when Matthew is happy, which he is a lot, he lives life functioning at an energy level of at least 15 on a scale of 1 to 10.  No one else can function like that.  He spins, he talks, he jumps, he sings, he exhausts me. 
it is nice to have this quiet.

I am going to use this time as the gift that it is for me and my boys.  Matthew is getting a break and life for him in many ways is easier in the hospital.  He thrives on having all of the new people to interact with and the schedule that is not able to be replicated outside of that setting is really good for him.

  I spoke to him tonight and he is happy.  He missed hebrew school which upset him, but beyond that he enjoyed his activities today.  I am going to see him tomorrow and will be meeting with the social worker.   I will keep hoping that new opportunities open and new meds help him to find peace.

Matthew is back at 4 winds

If you have been following along recently, it should come as no surprise that Matthew is back in the hospital.  I am not at the point where I can write a lot, too much is in my head right now, but there are a few things I have to share.

1.  I got a call saying 4 winds had a bed for him at 9 and at 11:30 I got a call saying he was struggling at school.  They were "surpised to see him so upset".  Are they not seeing the same child I am seeing? Are they not reading the emails I am sending....Is it too much to ask for a consistency of care between home and school.

2.  Upon arriving at 4 Winds I met with a nurse practitioner to discuss medications because the psychiatrist had gone home sick.  Now I am not, nor do I profess to be a psychiatrist, however, as Matthew's mom, I do believe I know him best.
 His outpatient doctor increased his prozac in October because he was seeming to be very anxious and starting to show an increase in behavior.  The nurse practitioner today said the dose is too high.  The outpatient doctor who I spoke to over the past week had no concerns about the dose.......who is right?  Who is wrong?  how will we know?

The hospital last time played with a variety of doses of seraquel for Matthew settling on an extended release dose at night.  He had been on a higher dose, no effect, he had been on a lower dose, no improvement.  This was the target and appropriate dose less than a year ago.    The outpatient doctor has not touched this dosage and sees no reason to.  The nurse practitioner today wants to increase that dose.  I begged her to please read through his chart. 
I truly believe we can't just add meds. We can't just increase dosages.  We hvae to get him off some medications, then evaluate and then try new medications.  However, this is where the insurance company comes into play......he can only be in the hospital while it is seen as "necessary".  "nescessary" is defined as them changing medications.  If they are not making daily changes or changes every other day, the insurance company questions whether he needs to be in the hospital, but if you change psych meds this often you are not giving them a chance to work. 

Tomorrow I will talk to the doctor and hopefully the social worker and a plan will be made.  For today, he is ok.  The little boys both acknowledged that they needed this break, and I am at peace with my decision.  I need a healthy boy back, and this is hopefully the road to healthy.

The good and the bad

The good news is that Matthew seems to have been reset after the events at camp on New Years Eve.

The bad news is that the rest of us are emotionally spent.


The good news is that I have found out that my support community is larger than I ever could have hoped for in my wildest dreams.
The bad news is that we are being lovingly supported by too many people who have also travelled this horrible path.

The good news is that I may have found a therapist for the boys and I who I like.
The bad news is that therapy is just one more thing for a single mom with 3 kids with special needs to fit into our already too full schedule.

The good news is that my knee was healing.
The bad news is that it "was" healing and now as I prepared to go back to some much needed karate, it has swollen again.

The good news is that tonight David and I will have some much needed time alone.
The bad news is that we are getting that time alone because we are going to Boston for some neuropsych testing.

The good news is that I am a mom on a mission for mental health treatment.
The bad news is that this may be the hardest mission of my life.

Thank you for the love, hugs, support and cheerleading!  Trust me, it does help!

our ending to 2012....it can always get worse

I opened a can of worms with my last post, and if our family is going to be a vehicle for change, I feel like I have to share the rest of our story. 

Yesterday Matthew attended a great camp program for children with special needs.  This program keeps him busy, which he loves, and allows me and the other boys some time to do errands and connect with each other.  While the boys and I were out, I received a phone call that 4 Winds had a bed available for matthew, but it was on a unit with 13-18 year olds.  You know that life is bad when you have the option of getting help for your child, but in a place that may be more unsafe for him than home.  Because of Matthew's disabilities he is 11 but acts like he is 5.  One would never put a 5 year old on a unit with 13-18 year olds.  Was I right to turn down that bed?  Was I over thinking it?  What would he learn from 18 year olds in a psychiatric hospital?  Would he get hurt?

I was unaware that Matthew had been reporting to the staff that he had been stealing a lot, and when I had tried to talk to the staff in the morning about it to get some help, they had been busy, so I figured I would just talk to them at pick up time.

When I came to pick Matthew up, the director came to see me and filled me in that she and Matthew had made a plan to help him have good behavior at home that night at our New Years Eve Party and to help with his stealing.  She reported to me that they had gone sledding for the day and had gone to the dollar store to pick up a toy for the program and Matthew and she were telling me all about what they bought and sledding when I saw the telling bulge in his pants pocket.  As I asked him what was in his pocket he quickly got upset.  He threw himself to the ground and denied anything was in his pocket.

I reached in his pocket and it was filled with candy from the dollar store.  Matthew started to rage- throwing shoes at me, kicking, screaming, cursing, out of control.  The director and I tried to calm him, but he was uncalmable.  he knew at this point that the New Years Eve Party would not be an option for him, and he was not able to move forward.

The director and I left the office thinking that we could give him some space, and he raged after us, throwing things, yelling, screaming, scaring the other kids.  The other staff and I took the other kids and D and J to another room while Matthew raged with the director.  After 10 minutes the director called, she could not get him to calm down and he was a danger to himself and to her, she was recommending calling the police and the mobile crisis team, I told her to do whatever was needed.

All of this time David and Jacob, other kids and I were coloring, but we were able to hear what was going on, for Jacob, David and I this was torture.  Jacob saw the police come into the building on the tv screen and his panic increased.  My heart sunk to my stomach.  I was being asked to stay out of the room where matthew was for fear that he would get more angry at me.  I was torn between being with David and Jacob and offering them whatever comfort I could and being with my Matthew- my poor Matthew who is so lost in his own head that he had no control.  He spit at the police, he threatened the police.  He lunged at the police, the police took him down to the ground.  I will be forever grateful that I didn't have to watch my baby be taken down by the police.

After about 30 minutes my father came to get my other boys and I was told I could come back upstairs where Matthew was.  He was calm and the police were ready to call off the mobile crisis team.  The director did not want mobile crisis called off for fear that Matthew would get upset again, and I agreed they should still come.  I went upstairs and found a manic matthew.  Chatting with the police about what was for dinner.  Asking about their uniforms.  Unaware of the drama his behavior had on so many around him.  The staff from mobile crisis came and talked to the police and then talked to the director and me and then talked to Matthew.

The mobile crisis team was determined to help.....
Was there a bed at 4 winds?  I told them no, just the one on the teen floor, which they and the director immediately thought was a bad idea.

Had I called his psychiatrist? I had, she saw no reason for a med change on New Years Eve.

They called Healy house, a short term respite program.  Was there a bed? NO.

There is a hospital 2 hours from home, there may be a bed, but now he was calm. Did that make sense?  no one really thought so.

He could go to the Emergency room.  They would give us a place to stay for the night.  He could sleep there and I could sleep in a chair next to him.  Did that make sense?  NO

The mobile crisis team acknowledged that we needed help, but in the end realized there is no help.  I thought maybe they could at least call the hospital and get us higher on the waiting list, but they can't do that.  They recommended counseling but agree that for kids with Fetal Alcohol counseling is not really the most helpful thing.  You see, Matthew knows what he did was wrong, he told us all about it, in a flat, detached manner.  As if he had watched it on tv.  But in the moment, right and wrong don't matter.  He can't control himself.  He is like a different person.  Totally detached.

I am going to look for a counselor for Jacob, David and I, the boys need someone to talk to so that they feel safe.  Hopefully that person can help on some level with Matthew.  I am going to keep my fingers crossed that the 3 week wait that I was told was likely at 4 Winds ends up being wrong.  I am going to tighten our support group so that if we need help, I can call multiple people and someone can come get David and jacob quickly.

I am going to do my best to keep the house calm, that should help Matthew.  I am going to hope that my families story is a vehicle for change.

You should never be in a place where you feel your son needs help and there is no help available.  There should never be too many kids who need help and not enough beds.  We need more options.

They say that if you put all of your problems and everyone else's problems in a pile we would all take our own problems back.  Last night, I wasn't so sure.  Today I am more determined to be a voice for those with mental illness.  I will tell our story, we will make change.  Please help me get our story told to those who can make a difference for all of the Matthew's of the world.