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!

Thursday, February 28, 2013

Mental illness, even when life is better it is still a struggle

I got my 3rd email today that  Matthew again had a perfect day at school!  I only wish I knew what had changed.  I started to get all excited, maybe the new behavior plan was the key to helping Matthew.  Maybe it was the medication change.  Maybe it was because he was happy to be home.

As I started to get caught up in all of the reasons life could be better, I realized that I have to be cautious when I find explanations for or take credit for things being better, because then it is easy to take blame for or assign reason for when things fail.

What has become exceedingly clear to me is that Matthew is a child who struggles with bipolar disorder and this along with his fetal alcohol syndrome are the explanation for his behavior struggles.  Of course, as with every child, Matthew needs consistency, he needs calm parenting and he needs structure.

Like all parents, there are times I excel at being calm, and providing structure and times when I am not so good at it.  I am realizing more as I see Matthew these last few days that he responds to my parenting very differently depending on his moods and it is his moods that create the struggle.

Tonight I got home at 6:00 and started dinner, helped Jacob to make a hat for hat day, watched David build a structure with boxes while giving him tape and listened to Matthew sing 3 songs and ask me to help him download music from itunes.  There is only so much any one person can help to make a hat, hand out tape and listen to songs while being talked at by 3 children before a mom goes crazy.  I asked Matthew to please focus on the computer and told him that I would help him download the music in 10 minutes if he was patient for 10 minutes.  I then tried to get the other 2 boys to be more independent so that I could get to Matthew.

Unfortunately, in the first 2 minutes of waiting, Matthew asked me 3 more times to help him download music and as dinner was starting to burn I was fried and told him he could not download music tonight.  I waited on eggshells.  Would this bring an explosion?  Hadn't I promised not to say no?  What happened to me being patient?  It was his earned time on the computer....why hadn't I had the other 2 boys wait and helped Matthew.

Then, an amazing thing happened, Matthew just got up and walked away from the computer and came in to the kitchen.  He apologized for asking so many times for my help.  

My behavior has not changed....I have to remember this because I have wasted so much of my time blaming myself for Matthew's behavior.  I have cried myself to sleep more often that a parent should, because I have thought I was a horrible parent.  I am just getting to the point that I am realizing that my parenting is pretty consistent.  It is Matthew's reaction to my parenting that changes based on his mood which is controlled by his mood disorder or bipolar disorder.

On Saturday when Matthew was struggling all I said to him was let's go to the grocery store to buy stuff to make cookies (rather than going to the grocery store to get a cookie) and he had a 2 hour tantrum.  Today, he dealt with not being able to download a song and losing a part of his earned computer time by apologizing for his behavior and moving on to play in the play room.  There is no predicting when he will change or what will send him into explosion.  There is no predicting when he will cycle again back into an aggressive cycle and when we will again all be in crisis.

What is important for you to know is that even now when Matthew is at his best, and he is truly better than he has been since October or November, he is still Matthew.  He is still a very exhausting force to be with.  Since he took the Lithium he has developed a hand tic, so now not only is his entire body in constant motion, but his hands are constantly wiggling. 

From the minute he gets up in the morning until the second he leaves for school, and the minute I get home at night until he actually falls asleep he is talking or showing me something or wanting to tell me something or singing to me.  He wakes up multiple times in the middle of the night to talk to me.  He goes to sleep telling me just one more thing.  I am taking time right now, while he is happy, to enjoy his one more things.  I am loving watching him enjoy music and enjoying his drums.  When he is happy he plays drums a lot.  When he is cycling downwards, he stops playing music.

Right now he and Jacob are playing a lot of music together.  it is these times that I hope that Jacob holds on to so he can get through the rough times.  I am telling myself throughout each day that I have to enjoy this time.  I have to treasure the smiles, and the happy sounds that Matthew is sharing so that I have that next time he is struggling.  I have to cherish our hugs and even his over the top laughter because it beats his anger. 

Matthew is a person of extremes.  He is over the top, he is the true description of  larger than life, but in his happiness, I can enjoy his laughter.  In these moments I am hanging on tight because I have missed his smile.  His whole being is constant and loud and intense, but the intensity right now I can deal with and I treasure after the last few months of struggling.

Thursday, February 21, 2013

I am a wreck

First and foremost, you have to know that I love all 3 of my sons with all of my heart.  That is a baseline.  That is the truth.  That will NEVER, EVER, EVER change!  Ever!

Second, I will always want what is best for my boys.

Third, to live life as conflicted as I feel can make a very sane person totally crazy.

Matthew comes home tomorrow and I feel like I am being sent back into war.  When he is in a respite program, it takes the little boys and I time to first deal with the anxiety and stress we have been living with and to come back to a place where the stress is at a survivable level.  Then we have some time to enjoy our new found level of calmer reality, and now we are back to a place where we know Matthew is returning and my anxiety is back to increasing.

We had a fabulous day today.  I went with 5 other friends and their children to a fabulous kid centered play area.  It was the perfect vacation day!  Fun, playing, laughing children.  Moms hanging out......kids laughing......totally the type of day I dreamt of when I became a mom.

Tomorrow at 11:30 we go to pick up Matthew and when I think about it my anxiety already sky rockets.  We will hopefully pick him up and he will be in a good place emotionally and I will be the best parent I can be.

I have promised myself to limit how often I say "no".  I am going to work to be more creative with my negative responses:
If he asks, "can I have a cookie?"   I will answer "yes, at 3:00 for now would you like fruit?"
If he asks, "can I watch tv?", I will answer, "yes, in an hour, for now would you like to play a game?"
If he is stressing out Jacob, I will say, "can you and I look for something to do on the computer?"

The word "No" seems to be a trigger for him, so I am going to work hard to cut down on how often I trigger him.

However, no matter how hard I am trying today to stay focused on all that I can do to keep life calm here, I know that this is not about me.  This is about my son who has limited cognitive abilities, and is affected emotionally by Fetal Alcohol Syndrome.  He is unable to control his emotional responses to the world around him.  He is affected by a mood disorder that makes it hard for him to respond rationally to the daily activities of life.  I cannot always say "yes", even if I wanted to. 

I am supposed to be working to put together a "safe box" with Jacob and David so that they have items they can use if Matthew gets upset while they are in my room.   I am screaming inside- I don't want to create a safe box.  I don't want to teach Jacob to call 911.  I don't want any of this!

I want life to continue as it is right now.  When there is quiet in my house.  When I feel like we have friends who we can hang out with and it is easy.  I want to be a regular family!  I want to visit my son as often as I wish.  I want to play an active role in his life, but I want it to be a positive role.  I don't want to call the police, and to be scared and to go back to living life full of anxiety.  No one would rationally choose to live life full of stress.  That would be a ridiculous choice.

I have made some progress over these 3 weeks while Matthew was at Healy House.
1.  I have rejuvenated my spirit.
2.  I have talked to many people who are looking for ways that they can help my family
3.  I have  been able to have a respite person hired for Monday afternoons who will give the little boys a break after the long weekend.
4.  I have set up a new behavior plan for Matthew for home that mimics the plan used at school.

However, 3 weeks goes quickly, especially when I am working and trying to save my sanity and still am responsible for monitoring the big picture of Matthew's life.  For example, yesterday I went to see him and he has developed a hand tremor.  It is not like I could just say, "well he is at Healy house now, they will deal with it".  He is my son. It was my heart that hurt to see his hand tremor.  It was me who called the doctor and it will be me who has to decide whether it is better to have a hand tremor on a medication that is helping or better to stop the medication and stop the hand tremor.

I have spoken to him daily multiple times while he has been at Healy House.  I have cheered for him when he has made good choices and reminded him to make better choices when he has made errors.  I have still been his parent.  I have likely been even more involved than a parent of a child who is at sleep away camp.  All the while, I have also parented 2 other children who were showing signs of anxiety and stress given our life before Matthew went into Healy House.

I am truly a person in conflict.  I want to tuck my 3 children into their beds.  I want to snuggle all three of them on the couch.  Hell, I even want to hear the regular sounds of 3 siblings fighting and struggling and then finding solutions.  I just am not ready for the big problems, or the stress of life that we were living with a month ago.  I don't want to go back into battle.  I am still tired from fighting the war.

Wednesday, February 20, 2013

It is just laughable

Matthew is coming home on Friday, and we are working to prepare ourselves emotionally for his return. Even if he is at his absolute best, Matthew is noisier than most and talks a LOT, so the quiet that Jacob, David and I have enjoyed at a bare minimum will be gone once he returns.

He seems to be in a cycle of having a really good day and then a not so good day and then a really rough day and then he cycles through again.

It is also completely and totally possible that this is just the reports that I am getting from Healy House.  I almost get the sense that they have to show improvement and so that is what they are working to do right now.  He had a rough weekend, I know this because when I visited this is what I was told and this is what I observed.  He was not allowed to go on any trips all weekend and spent a lot of his time in the "back" being kept away from his peers.  He was sent to bed early each night between Friday and Monday and was often taking breaks in his room.   However, when I called to check on him, the social worker said he was "showing improvement with the structure and support and number of staff at Healy House".  Improvement?  Where? Did I miss it?

So today, I was planning a visit to see him and I called to see what time was a good time to visit.  I was told by Matthew that there was an afternoon field trip, so I asked him to find out what time the afternoon trip was and what time he would be returning.

The dialog from the staff member was this:

me- "how as Matthew's day?"
staff- "he is having an ok day"
me- "so he will be going on the afternoon trip? I want to come and visit him and I am trying to figure out what time works"
staff- "I don't think he will be going, he would probably rather visit with you than go on a trip."
me-" he says he is looking forward to the trip, and I can come after the trip.  Will he be allowed to go on the trip?
staff- "well his behavior hasn't been great, I don't know if anyone is going on the trip, but if we go he will go"

Ok, so how is his behavior?  The deal is usually if you are being safe and compliant you get to go on the field trips.  Is he being safe? compliant? Is this just a tired staff member? 

I have to remind myself that this program in many ways, especially on a vacation week, is just a way for the family to have respite.  Some of the staff does an amazing job teaching and guiding Matthew's behavior, but some of the staff does not. 

The respite for Jacob, David and I has been great.  My only concern is that I have not yet set up a new behavior plan for when Matthew comes home.  I am working on a plan, but I want to make sure that it is one that I can implement and follow through on 100 percent of the time.  I am looking to try to implement a plan at home that is similar to what they do at school so that he understands how the plan works.

That said, I am one person with 3 children and dinner to make, homework to do and other mom jobs, so I have to be realistic about the plan that I create.

I worked with Jacob's new therapist to create a safety plan for Jacob and David for when Matthew returns.  She and I are working to empower Jacob and we are putting together a safety box for Jacob and David to use when they are scared.  I am going to teach Jacob how to use the phone and call his grandparents if he is feeling scared.  Upon hearing this, Jacob quickly made his own little phone book.  When the therapist asked if David would ever call his grandparents if he was scared, Jacob quickly giggled because while David might dial the phone, Jacob said David wouldnt talk.

Jacob may be one of the most insightful children I have ever known.  He is amazing at reading David and understanding what he needs and even at reading his peers.  I think having him work with a therapist will provide him time to destress each week and will allow him to have a time where he can just be 6 years old.  I am also hoping it is a time for him and I to be together where he will know each week he will have my undivided attention.

Saturday, February 16, 2013

It is hard to make the hard decisions, but for Matthew, it is a necessity

I often think about the fact that I am 3 different kinds of moms one for each of my 3 boys.  For Jacob, I am quickest to laugh, and to joke and I think he and I share the same kind of humor.  For David, we can cuddle and read and enjoy quiet together.  For Matthew, I think of my job as being the person who is prepping him for life.

I know that when I look back on his childhood, I will say that there are things I would of course change, but that my consistency with him, and the fact that I held him to a high standard is something I feel pretty confident about.

I once read that for children with challenging behavior you have to be consistent 100 percent of the time.  They use the inconsistency as an opportunity to "get ahead" and to see what they can get away with.  For Matthew, I am never certain how much he comprehends, but he does seem to thrive on the loopholes of life.

For example, his behavior at school has been pretty horrendous and he had a horrible day the other day at Hebrew School.  Given this, the senior counselor at Healy House and I decided that life at Healy house would become a little stricter for Matthew.  He would have to earn privleges such as off campus activities.  For Thursday he knew he would be staying inside healy house and would not be going on field trips or to the gym.  Well apparently one of the other clients got upset and so Matthew was taken outside for about 10 minutes while they calmed the other child down.  Of course, when Matthew called me at night, the first thing he told me was the he "got to go outside".  I had already heard the story, so I knew why he had been outside, but his "bragging" about getting to go outside leads me to believe that on some level,  he looks for the loopholes.

Tonight we went to see Matthew, and in the car Jacob asked if he could come home for dinner.  I quickly said yes, and when we went inside I told Matthew that he was coming home for dinner.  Matthew then asked about bringing a toy back to Healy House after he was home with us and I explained that our rule was that toys stay at home.  He got upset and started to grumble and kick things.  I tried to remind him that he could play with the toy at home, and I tried to get him focused on playing at home, but he continued to grumble and grouch.  I then asked him to go take a few minutes in his room and we would decide after that if he could come home or not.

The head counselor and I then went back to talk to Matthew.  I was firm that he was not going to bring a toy back and that he would have to see how his behavior was for a few more minutes before I would allow Matthew to come home for dinner.  The head counselor, trying to make Healy House sound bad for Matthew, told him that if he stayed at Healy House he would be away from the kids and go to bed at 7, 2 hours earlier than the other kids.

Matthew was clear then that he wanted to come home but was still grumbly so I suggested we play a game and then head home if he was kind.  The whole time we played, Matthew was grouchy and just unkind and it was clear to me that taking him home didn't make sense.  As we were getting ready to play again, he made a grouchy comment and I decided that the other boys and I were leaving.  We stood up to go and Matthew started screaming for me.

It was not at all easy to leave, but he has to know that I mean business and that the behavior issues have to be controlled by him to some degree before he comes home.  I thought I could trust that the consequences as they were laid out for him would be followed through on.  That was the reason to leave him at Healy House.   They had spelled out the consequences, I had not asked them to.  And there was enough staff to help follow through on the consequences for him.

After we left and drove home, I called to check on Matthew.  I was shocked to find out that he was happily eating fruit loops.  The staff member who had been tasked with helping him calm down had given him fruit loops once he was calm.  I blew my stack.....what was he learning?  How was this helping?  Sure, it calmed him down.  If I all wanted was a calm child, I would have said, " hey, in your crappy, rude mood Matthew, let's go get donuts and mcdonalds, and pizza". "You can abuse us and yell and threaten your brothers and I will buy you cake and cookies.".  I don't play that way!  I can't.  it is too important that Matthew learns that behaviors have consequences.

I then asked to speak to the senior staff member, the one who had told Matthew he would be going to bed by 7, given his behavior for the evening, and I asked him if Matthew was going to bed.  He said that he had to leave and Matthew would go to bed a little early.  A little early wasn't the deal!  A little early wasn't the consequence that was stated.  A little early will not register with Matthew.  A little early is Matthew not learning this all important lesson.

I had not asked the Healy House staff to give Matthew a consequence.  My thought was that my leaving him was the consequence.  However, since they gave him a consequence, they had to follow through.  You want to see an angry mom?  This mom doesn't play games with discipline!  I can't. I am on a mission to get my son to understand cause and effect.  School and I are on the same team.  They are consistent and have great follow through.  Given his behavior and his age, there are only so many more years that I have that I can teach Matthew what most children learn as toddlers and preschoolers.

What I thought was funny was that Jacob overheard me asking the guy why he had given Matthew Fruit Loops, before I went upstairs for the rest of the conversation.  When I came downstairs, the first thing Jacob said was, "why did they give him fruit loops?  You don't get fruit loops for being out of control."  Jacob thought I was crazy when I picked him up for a hug with tears in my eyes, but it was nice to know that the lessons I am teaching and the standard I am setting are understandable to a 6 year old.  It made me feel like I am making good parenting decisions.  I figure if a 6 year old understands the insanity of the  Fruit loops, I must be on target.

Now if only I could get the rest of the adults to understand my parenting the way that Jacob does, then we will have a chance in hell at Matthew learning the importance of actions and consequences for those actions.

Saturday, February 9, 2013

home last night

Matthew had a psychiatry appointment yesterday so I picked him up at Healy house to take him.  He didn't want to leave Healy House and started to fuss.

My response to the fuss.........I got sad, I got mad, I got my heart hurt.  His consequence for hurting me? I told him he would have to stay home last night.

I want my son to want to be home.  What am I doing wrong that he doesn't want to be with us anymore?  He claims it is the access to the gym at healy house.  The field trips.  The dessert after dinner each night.  He claims it is the arts and crafts.

I can't hear any of this.  We do outings more than most families.  We have art supplies.  He goes to the YMCA.  Sometimes we have dessert and sometimes we don't.  What is wrong that Healy House is better than home?

This morning since the minute he woke up he has been fighting with Jacob.  Just pick, pick, picking at Jacob, and Jacob has been responding with a whine.  The whine that makes Matthew know that he is bothering him sos he bothers him some more.

Finally, after I was at my wits end, I told him no more computer.   That was the straw that broke the camel's back.  He ran around the house angry.  I told him to sit.  He wouldn't sit.  I told him to sit. He wouldn't sit.  We were like freaking Tom and Jerry- me telling him to sit and walking towards him.  Him screaming NO and running away.

Talk about feeling powerless.  What kind of control and discipline is there in a house when the child runs away and screams?  How can we be successful when I can't even get him to sit to talk and calm down?  How can I parent him? How can I not?

My heart breaks when he is home and it breaks when he is away.  I love him.  He is my first born.  I want him home.  But we cannot live this way.  The little boys have been in my room for an hour while Matthew screams and curses and threatens to hit me.  Matthew, with his little boy face, has called me every name in the book.  I was angry, I tried yelling.  I calmed down, and tried talking nicely.  I asked him to shower to calm down.

He screamed that he wants to go back to healy house where they don't yell.  I want to go somewhere where I get to parent a child with FAS and have staff at home to back me up.  Where we could have gotten him into a safe place and kept him there while we also  looked out for the emotional  safety of the other 2 boys. 

I want Matthew to want to be home.  I want him to realize that home is better.  I am at home.  My love for him is at home.  Home has to be better.  Doesn't it?  Why would it not be?

I am an educator for Fuck's sake!  I can teach most children!  I am a favored teacher at school.  Why can't I reach my son?  What the hell am I doing wrong?  Why doesn't he want to be with me?  I didn't know a heart could feel this hurt and yet have no answers, all while trying to love my son.

If I could take back the drinks that his birthmother drank, I would first make her spend a week with him like this so that she knew the damage that each and every sip of beer or alcohol or wine did to every part of his brain.  No drink is worth doing this to another human.  Nothing is worth this!

Tuesday, February 5, 2013

what the future holds

I have had a day that most people live in a week or a month......

I feel as though right now every time my phone rings I cringe....I dont want anymore bad news.  I don't want to know what is going on.  I want a few hours or days of blissful ignorance.

I got a phone call from Matthew's school today that he was out of control.  I don't know what is happening.  Sure, he used to have a lot of times at home when he was out of control.  When his rage took over.  When he was aggressive, but just a few short years ago, I was fighting for the people outside our family to see this side of Matthew.  Now it is like the demon has come out in public and it is out all the time.

He raged for almost 45 minutes at school today.  Why did he rage you ask?  Because he lost computer time.  Why did he lose computer time? Because he yelled at his teacher.

He had many other options at free time, he just couldn't use the computer.  He could read, play games, color, play with playdough....he had a million options, but when you yell at your teacher, there are consequences.  It is as if he cannot understand that life has consequences. When you treat people poorly there are consequences.

He raged until the crisis team at school came and helped him get to the quiet room.  He has not been at this school yet a full month and has had more days with struggle, than without.  What does this mean?  How do you sit idly by as your child goes deeper and deeper down the hole of mental illness?

I don't even know what to do anymore. I am scared to have him come home.  I am scared to have him stay at Healy House.  I am scared all of the time.  It is not living to be in an institution like Healy House.  That is not real life.  In real life there are errands to be run, people to interact with, expectations to meet. At Healy House, there is a gym to go to, games to play and then movies to watch.  Life is not made up of movies then free time then movies.  That is not a life.

I have one psychiatrist now who says the zoloft and other anti depressants are causing the mania and depressive episodes that Matthew shows with rage.  Another is saying he needs the zoloft to deal with his anxiety.  One of them is saying raise his seraquel.  The other is saying get him off of the seraquel.

I am saying I am his mom.  I can decide if he eats veggies or cookies.  I can decide if he can ride his bike or ride his skateboard.  I cannot decide if he should take 1 psychiatric medication over another.  I don't have training.  My crystal ball is broken.

I can tell you I want my son back....I want my son from October back!  I want this version to go away and never come back again.  This version scares me.  What if the other Matthew never comes back?  What if I am left with the one who rages, and gets giddy, and rages, and is out of control?  What if the best I can hope for is that he will be struggling in a classroom with only 3 other kids and 4 adults?  I don't know if I can live like that?  It isn't what I hoped or planned for.  It isn't what my boy had been supposed to live like.  He was going to be the drummer in the school band.  Didn't God see the memo?  He was supposed to be the drummer!

He was supposed to have friends. All people have friends!  He needs friends Dammit!  He needs friends!  I need him to have friends.  I need him to come back to me!  Please!  End this cycle of mental illness.

I feel like I am going crazy!  But I can't go crazy. I have to go to work each day.  So I have to shove all of this emotion deep down and keep smiling.  I am running out of smiles.

On top of all of this, David came home today and was drooling and couldn't move off the couch.  It could be strep throat.  It could be the flu, but for David it could also be seizures.  Tomorrow, he will either wake up healthy or sick and I will know, but for tonight I am on seizure watch.  I am too tired for seizure watch.  I am too tired for all of this right now.

I went to karate because I had to escape, so I hired a babysitter to be with the little boys and Matthew called 3 times while I was at karate.  I needed to talk to him, but I needed my time too.  I can't be everything to all 3 boys right now.  But I am their one and only and so I talked to him.  But he isn't completely present, so he wanted to talk but had nothing to say and all I could think was if I don't punch and kick at karate I may explode.

If these stupid tears would fall from my eyes there would be room for me to pull myself together and get back in the game, but I am afraid if I let the tears fall they won't stop.  I keep it all together from 7 AM until 9 PM each day, and then I am washed over with sadness as our reality hits me in the face.

I know it could be worse.  I know that....please trust that I know that.  But unless you have seen your child taken over by mental illness, you cannot appreciate what this is like.  With any other illness, I could hold him and hug him and kiss away his booboos.  With this, he is safest not at home, so I miss him but know he can't be here.  For a mom, this is the ultimate struggle to try to rationalize.  My boy should be home, but I can't keep him safe.

Saturday, February 2, 2013

thoughts in my head

missing him
wanting him home
hating the struggle, hating the place we are in

Realizing he is where he needs to be
but my heart is missing him constantly
the house is quiet
quiet is good, but I wish there was noise

noise of 3 boys playing
laughing, giggling
enjoying their time together

I do not miss the real noise
the whining, the screaming
the hitting, the fighting
the noise of his illness

the noise of his mood disorder
the noise of his brain damage
the noise that has filled our house

I miss the noise of his giggle
it has been forever, since it has been alive
in our house, in his world, in him

I miss the noise of him
up in the morning, on the computer
singing song after song after song

He is where he needs to be
Healy house is providing him safety
comfort, calmness

They are a respite for all of us
for him he has new faces, new people,
new activities

for Jacob, David and Me
we have calm, quiet

I would give it all up in an instant if he could be with us
a mom should not choose safety vs her child

a mom should not live like we are living
a boy should be happy,

come out of the bad spot you are in Matthew
mommy needs you home