About Me

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

Wednesday, April 28, 2010

day by day

Over the past few years it seems there have been some intense ups and downs in my life and I guess one of the good thing that comes out of it is that I am learning how my body deals with lifes major stressors.

With minor stressors, I am totally a food coper- I eat my way through the stress and tend to come out a little heavier, but a happier person on the other side.

However when it comes to major stress, like I am currently dealing with for Matthew, my body basically goes through a stress cycle. First for a few days I am too upset to eat. As someone who often copes with stress by eating, this is a very sad state of reality. I can go days at a time subsisting on bananas.... a food I am not usually fond of...but one that gets me through intense stress.

Then it seems I have to have at least one day that is full of hot fudge and peanut butter- some ice cream just to provide purpose for the fudge and ice cream, but really the ice cream is not a true necessity.

And finally, thanks to my irratible bowel, I have a few days of intense stomach illness....these days I really just need to be in bed. This is when I might finally cry, or at least allow myself some time to deal with all that has occurred, it is basically like my body screams and yells until I am so sick to my stomach that I have no choice but to slow down and take a few hours to myself.

Since Friday I have still not cried, I have still not eaten much, I have still not allowed myself to cope with the reality that I have a son with not only a developmental delay but also a mental illness. I am not sure when or how I am going to let myself deal with that fact. I do know that we are in trouble- a good friend brought me a pint of Ben and Jerry's and it is going on day 4 in the freezer unopened. It is not that I have not thought about that pint of ice cream, but rather I am still not even at the point where it sounds good. For a plus size person, that is a sad statement.

Matthew's school has been good to me this week- they have provided a little extra communication, and been very, very supportive.
We saw Matthew's psychiatrist on Monday and she prescribed Lithium for him. I can't bear to research this medication. To me this drug is a sign that my son is ill....very, very ill and this makes me sad. I know that it is a medication that has been around a long time. And I am sure that it is something that is safe for him. It is just that it is a medication that is known to me as being for people who have true mental illness and I am not at that point of acceptance yet.

What happened to my 2 year old who made the world laugh? What happened to my little boy? How did we get here? What will become of him? Why God? Why us? Why me? Why Matthew...sweet Matthew?

For now Matthew is happy, very, very happy! I am trying to get there- to balance my frustration. To realize how little control he has over all that goes on. To appreciate him being happy is better than him being angry. But it is hard. When Matthew is like this he is up early. He appreciates the birds singing. He wants me up with him. He wants to call his Bubbe (grandma) early in the morning. Now I no longer have to worry about all the food he is eating- that has slowed, but rather I need to police who he is calling, cause he wants to talk all the time. He wants to feel connected- he wants to show off his music.....he would call my parents at 3 AM if I let him. He would call anyone and everyone he knows- the world is invited to his baseball game on Saturday....everyone he knows is invited to his house- he is happy! He is excited! This is the other Matthew that lives with me!

The only blessing in all of this is I am starting to see the patterns. Happy matthew calls his grandma daily. He speaks to her dog and loves it. He plays his drums. He wants to share about his day.

When we are entering a dark or more aggressive period, he no longer calls his grandma, I actually can't get him on the phone with her. A week before "the incident", my parents were at the house and Matthew essentially ignored them and chose to ride his back rather than being with them. I figured maybe he was just outgrowing his constant need to be with them....now I wish that was the case. In his darker days, he doesnt play drums. Instead he zooms his cars back and forth in the play room.

If I can catch the rhythm at least I will know when to contact the doctor. I can stop blaming him for his "misbehavior" and rather I can realize that this is a call for help. Figuring it out is half the battle.....I know that somewhere inside of me....but in my heart, I am sad, and so wishing that he didnt have these ups and downs. But writing this down if nothing else will provide me with the knowledge that Matthew does have cycles, and ups and downs, and if I can figure them out then maybe we can support him medically and then it will all be easier.

If this can be easier, maybe understanding it is the first step.

Sunday, April 25, 2010

mental health

It is interesting to me that you can be sick with any kind of illness and people are sympathetic, offer care and support and word spreads through the community and well wishes are shared. Mental health however is the unspoken illness, the illness that is not shared. The secret that is well kept and well hidden. Unfortunately, while I have lived this year hoping that we were going to be able to ward off mental illness and that maybe with medication Matthew would quickly get better, on Friday things came to a head, and his demons and struggles are becoming more and more obvious everyday.

Matthew's aggression at home is nothing new. He is a 116 pound 8 year old, with the developmental level of a 5 year old, and the emotional capacity of a child even younger than that. How does your average 4 year old deal with life's frustrations? How do they cope with being told "no"? Now quadruple the child's weight, and add the life frustrations of an older child- homework, complex relationships ect...and you have a ticking time bomb.

Apparently on Friday life at school exploded. It was over the silliest thing- a "tow token" from gym class. Matthew had taken 2 and was supposed to only have 1. Like all of our favorite toddlers, he truly believed that if he said he had 1 then he could magically make the second one disappear. So he "lied' to his teachers aide, then he lied to the teacher, but of course they knew the whole time he had more than he was supposed to. As a consequence, he was told he could no longer have any "tow tokens" and the scene was ripe for an explosion.

Matthew lunged at his teacher's aide, and screamed obscenities throughout the classroom. As he and his teacher walked down the hall, he tried to get out the front door of the school. I was called to come pick him up, since he couldn't ride the school bus, and the team and I met. Unfortunately, as he and I were leaving school, he was still unable to settle. We barely made it outside before he hit me in the back with his backpack and ran through the parking lot towards the road. IN order to keep him and I safe, I brought him back into school and he returned to the quiet room. For me this was an eye opening experience. Sadly his agression was nothing new to me, but I have always thought that it was my fault, and second guessed myself- if only I had ......., I could have stopped the agression by....., but as I watched his teacher, the social worker and the principal all help him get to the quiet room, it was obvious. What I ahve been trying to do alone, requires 3 adults at school. What I ahve tried to do to calm him, has made him uncalmable by 3 licensed adults at school. The reality that we were dealing with real demons became obvious. The reality that we BOTH needed help smacked me in the face.

After another 45 minutes went by and Matthew was still unable to settle down, the teacher, social worker and principal helped guide me to the reality that it was time to call the mobil crisis unit. Three of the nicest people came to school, and met with what was now a very calm Matthew. However, even in seeing him calm, it was obvious that this was a child in distress, and so we were told that the next step was the Capital District Psychiatric Center (CDPC).

I have never felt as hopeless and afraid as a parent as I did when he and I ended up at CDPC. You ring a buzzer to get in, and you are locked inside. Even the door to the bathroom is locked. You are no longer free, you have to ask for everything. Thankfully some of the nicest people on earth work in this facility and they made a challenging situation as easy as possible.

The Psychiatrist met with us at CDPC and it was again determined that Matthew needed more help- the plan was to find him an inpatient setting for a while in order to get his medications adjusted. LOcally there are 2 Psyciatric HOspitals. One is private and can whichever cases they choose, but on Friday they had no beds. The other is public but you have to be 11 to be a patient there. That left me as a single mom, likely taking my oldest child to a Psychiatric hospital at least an hour away, and balancing the care of my 6 year old and 3 year old between their grandparents, friends and babysitters depending on the day and time.

Overnight Friday night, I adjusted to this reality- that a hospital was likely the best choice for Matthew. That he deserved the best, and that the other boys would be ok. I knew that my job would be ok, and that I am surrounded by amazingly loving, caring people.

Sadly, at 8 AM Saturday morning, this plan was changed. The new Psychiatrist came in, met with Matthew, and aksed him a few questions. He determined, that Matthew is too low functioning to be successful in a hospital setting. That he requires a very structured, regimented outpatient program and needed a new medication. However, he was unable to prescribe the new medication. The Psychiatrist he sees is not available on Saturdays, and we were discharged.

Thankfully, Matthew is doing well this weekend. I have had the support of amazing people in my world, and Monday AM I will call his doctor and a plan will be created. Unfortunately, the system is completely broken.

If you break your arm, you go to the hospital and receive care. if your appendix bursts you receive care, but if you are tormented by demons, if your brain does not work the correct way, there is no where to go, no one who can help, and you are left to wander through the system, hoping to gather support and help from people you meet along with way!

When I started my family, this is not at all what I envisioned for us. My hope will always be that this is a blip on our radar and medication will help Matthew. This blog is my way to share our journey and ups and downs in life. This is where we are currently....struggling through the mental health system, with our heads held high, because I refuse to be embrassed taht it is my sons emotions that are broken.

Monday, April 12, 2010

Cracker Carb Crazy

Oh man, today is one of those days, I just can't figure out how to solve our ongoing problem...I have asked for help from a variety of sources, and now I am just plain frustrated, as there doesnt seem to be a solution in sight. I am tired. Very, very tired......so I am hoping that by blogging either a solution presents itself, or I write out my frustrations, and wake up ready to take on the struggle again tomorrow!

The Problem----matthew is obsessed with carbs!

The subproblem----I am obsessed with stopping Matthews carb obsession

The reason?----if I am being super, super honest....cause I hate watching him obsess. I hate watching him obsess over anything, and a food obsession is the worst. Not only does it mean that he has lost control of himself, it also means that there are crumbs or wrappers or signs of this obsession ALL OVER MY HOUSE!

Now as an overweight adult, it is fair to say that I love food. There are times I go to bed dreaming of what I will eat the next day. There are even nights when I eat not cause I am hungry but because I am bored or tired, or sad or countless other emotions.

I know the struggle of being overweight. I hate to watch my 8 year old son have that struggle. but more than that, I hate to watch him struggle with an inability to stop himself.

If you knew you were going to get in trouble for doing the same thing over and over and over again....wouldn't you stop?????? If you knew that what you were doing was making someone upset repeatedly, wouldnt you stop?????

He can't stop, on some level I know that! He is being driven to eat and eat and eat and eat and eat.

I hate it. It is another big neon sign that says that Matthew is struggling with life! matthew is different......I HATE IT! It breaks my heart, it makes me sad, it makes me tired to clean it up over and over and over again.

Tonight, my new plan is to box up all the carbs he loves and to put them away somewhere he can't find.

I also plan to promise to myself that tomorrow will be a day that I dont get frustrated by his eating.

I promise to be kinder to him and also kinder to me!

If only he would leave the crackers alone....this would all be so much easier!

Wednesday, April 7, 2010

April Vacation

It has been a whirlwind two weeks. Last week Jacob and I had the week off and my brother, sister in law and their two girls came in to see us from North Carolina, so while M and D had school, I gave them some half days so that they had a chance to hang with their cousins.

This week we are all on vacation and basicall are spending out time testing out all of the local playgrounds. There is nothing better than watching groups of children negotiate life at an inside or outside playground.

On Monday we went to two parks, one in the morning and one in the afternoon. In the morning we walked with my mom and her dog and saw the cows and the ducks which the boys loved. In the afternoon we met some friends and the boys hung out on the playground. The kids had a great time at both parks and by the time we got home, they were exhausted.

On Tuesday we went to Chuck E cheese with another family with 3 kids, one of whom has special needs. Within fifteen minutes of our arrival M and this other little boy had drummed up some trouble with another child. Not to our surprise at all, it turned out the other boy also had some issues....and so he and M spent the rest of the time at Chuck E cheese coming over and repeatedly saying goodbye to each other and being happy that they had each made a friend....cute and quirky in its own way to watch this unfold, but totally not surprising.

Today we went to an insane playground in the morning...the park was filled with likely over 150 kids of all ages. Needless to say, David became quickly overwhelmed and when we walked over to the pond to see the ducks, he dumped his lemondae on the floor. As I walked away briefly to fill the lemonade bottle so Jacob could have some water, I heard one of those slow motion yells of "no", "stop" and instantly knew that D was causing some form of drama. To my surprise....floating in the pond was D's right shoe. Shockingly this obviously happens from time to time because multiple people told me that they have something at the park that they can use to grab things from the water. Better yet, today they had a boat on the water and the men in the boat happily came over and fished out his shoe.....if only I could tell you that D would learn from this experience....thank god for our friends!

Finally this afternoon we went to a small playground at Matthew's school....this out of the way, little known park is basically the key to our success...except for the bees that were flying around our group of 7 had a blast for well over an hour!

Thankfully this break has been full of good weather, great friends and enough bags of pretzels and cheetos and juice boxes to feed a small country!

Saturday, April 3, 2010

My grandpa

Tonight I am feeling reminiscent....it may have something to do with it just being a great day. It may be because I went through my camera and found pictures I forgot I had taken. It may just be because it is 1 AM....but for whatever reason, today I feel like I have to write this before I go to bed....

My grandfather died in August 2000, this was the summer before I adopted Matthew. After 4 long years of waiting to adopt a baby, Matthew came into my life during the second week of me directing camp the summer of 2001. This may not seem significant except for the fact that my grandfather started a day camp in New Canaan Connecticut that has been a part of the lives of so thousands of people over the past 40 plus years.

As I was growing up when we went to my grandparents house, we actually went to day camp at Camp Playland.... a property with 4 playgrounds, 3 pools, nature galore and basically a kids wonderland...but to me my memories are of "Grandpa's Rocks". Two gigantic rocks that are about a foot apart that my grandpa had us jump between each visit. From the tall rock, to the shorter rock, and back....it was a sign of bravery to make the jump. It was fun and entertaining. It was pure....and it was just me and my grandpa as I made the jump!

About 3 weeks ago we went to Connecticut for my grandmother's 89th birthday, and it was important to me that Matthew and the other boys, but especially matthew, spend time at camp. I was hoping to pass on to Matthew how incredible his Great Grandpa's camp was and just what a special place Camp Playland is. Unfortunately, it was a horribly rainy day and so while Matthew loved riding around the camp in a golf cart, and had a little bit of time to play catch outside, I wasn't sure that I passed on my feelings of love to Matthew as I basically begged him to jump on Grandpa's rocks.

Fast forward a few weeks...
This Passover we were lucky enough to have my grandma, and my brother's family join us at my mom's and dad's house for the seder! On the first night of Passover we had a large crowd, and I prefer to just read through the Haggadah and enjoy a typical seder. The second night though is usually smaller, and I love to make it more special for the children. In our Haggadah's there are family activities that you can do to make the seder more understandable for the children.

One of the pages asks how is God like a Rock....
Matthew quickly started to answer and included all of the following: God is strong and big and rocks are hard and you can jump them like Walter, my great grandpa...I am Matthew Walter....I jumped on the rocks!
I will always treasure Matthew's answer....in a few words he managed to show me so much...
He understood God.
He understood my grandpa
He understood the importance of Grandpa's rocks
he and I had shared a memory at Camp Playland!

For a little boy who at times struggles sooo much to make things make sense...he got it! He jumped on Grandpa's Rocks and it mattered!