Love you, Peanut Pants

Yep, Peanut Pants - that's what I call him, not sure why but it's been his nickname for a long time.

Tomorrow morning he is being admitted to the psychiatric ward of our local Children's Hospital. I hate that we are going down this road again but each time I learn more and am better able to deal with what comes next. Now we know that April and May are hard for him - he was in the hospital Mother's Day last year.

I wish he did not have to go through this, that his mind could be rid of all the ugly that lives there. I would never want to spend a minute in his head but if it would make him live in peace, I would in a heart beat.

Little Man, I love you and I hope you are home again soon.

Anonymous

As I write this today, TLM is in his room screaming that he's going to kill me.

Earlier today I told him he should take a nap when he finished his eggs...the wrong words on my part...and he went upstairs and dumped out 500 Legos on the floor. Now he's upstairs and he's supposed to be cleaning them up, I refuse to help.

Today was one of the bad days. He ran away once already, I am back to locking the doors at the top where (for now) he can't reach. I yell and I scream, and in the back of my mind I secretly wish that the neighbors would call the police because that may be the only way I get a break from all of this. I swear, because it's better than hitting, and now he swears back. And I think I'm going to hell because I believe with all my being that I am one of the worst mother's alive. He has a disability, one that makes him succumb to his mania and it's not his fault. But at the end of the day, I forget all that, and I'm tired, and I'm alone, and I can't do it all - I become the bad mom that I despise.

He's violent again, hitting me and throwing things at me. I know there will come a time, maybe not this year but soon, that I won't be physically strong enough to protect myself against him when his stability is in question.

On the outside, the 'me' that everyone sees, I am strong and an advocate and a 'wondermom' of sorts. On the inside, the anonymous 'me', I am scared and I am alone and I don't know what I am doing. I'm sure that I am scarring him, that he will recount these days when he's older of when I would scream at him and turn red in the face with anger. Hopefully when he's older he will understand that I tried my best and that behind it all, I really loved him and cared for him and was just trying to hold it all together.

I hate the unknown; and his future, and my own, is a huge unknown. I don't know what it will be like when he's 13 and manic...I do know 3, 4, 5, and 6. I'm meeting 7 and it's not any prettier than the others. I see his cues faster, I already have an appointment with the psychiatrist for next week which is way farther ahead of the game then we were last year. I just hope that it's soon enough. I don't want him in the hospital again, it did nothing for us, we gained no speed and stumbled a lot on the way out. The only good it did was give me some sleep, I spend my days wishing for it to end only to spend my nights in near panic over what the next day will bring. It's a viscious cycle and I can't break free - not until he is freed of his mania, unfortunately, that can take 1/4 of a year.

Average Joe

Today was the 'Big Meeting', my sit down with the district to review all of the tests that were conducted on the Lab Rat (I mean, the Little Man) since February.

An IQ test (the WISC-IV) was given and he scored a 100. This score may or may not go up as his Processing Speed is significantly delayed and interferes with his other areas. If that score were to increase, his overall IQ would increase as well. A score of 100 is perfectly fine with me though. I, of course, think he's a genius, but I'll take average if I have to.

His reading score on the WJ-III was 1st Grade/3rd Month which is no where near what he scored on the other assessment that his teacher used. We are going to be looking in to that further, I am leaning towards the WJ-III being the most accurate. Unfortunately he scored in Kindergarten 0 months in math which doesn't bode well for my aspirations of him becoming an entomologist or a neonatologist. We'll need to work on that. Not a laughing matter however is the fact that he has now been listed as Learning Disabled. He's too young to determine specifically what LD's are present, and if there is only one or multiple disabilities.

He had a 'clinically significant' delay in 15 out of 22 areas in his social/behavioral assessment. I don't have all of those results yet, should be receiving them next week.

My big 'hurrah' for the day...1:1 OT for fine motor!!! There is no denying that his poor motor planning, motor memory, organization, and fine motor delay are holding him back in multiple facets of his education as well as other areas of his life. Not only did I get the 1:1 OT but they will be specifically addressing the inability to tie shoes and button buttons. I feel like I won a marathon right there!

There is still a lot that needs to be addressed. We did not begin discussing next years placement. April 22nd is the next scheduled meeting for a full IEP review; those usually take a good 2 hours out of my day and I am knee deep in research and note taking at the moment. I am confident that I will get extended school year for him and that I will feel at ease with the placement that is recommended for the fall.

Unfortunately, TLM seems to be a bit manic at the moment. I'm hoping that it fades quickly and that we don't begin walking the dark roads of last April - the path that lead us to the hospital a year ago. Cross your fingers for me that 'this too shall pass' and that we come through unscathed.

But I'm his Mom...and I'm supposed to fix this stuff

I had a long conversation with the Little Man's teacher yesterday. It all started with just wanting a progress report on his day - he had a rough couple days but not in his typical fashion. He was crying a lot and having accidents at school and at home. Turns out my worry was for nothing, he was doing great and earned 1 1/2 out of 2 stickers for the day!

We began talking a lot about his progress through the year and where he is struggling. She broached the subject of his current placement (integrated classroom with 6 special needs students and 15 mainstream) and stressed how this placement is with the intent of having the students working primarily in a large group setting - one that he is just not ready for. ALL of the class instruction is having to be retaught to him in a small group setting or one on one. His teacher, as I've said before, is amazing though and I think she actually enjoys the one on one time she has with him. While I appreciate all the work she's putting in for him, I know that it takes away from the other students in class. I believe she is trying to prep me for Contained Learning Classroom for him next year - a classroom comprised completely of special needs students.

I have been growing increasingly concerned with his social skills lately. He has always been delayed in this area - and when he had his initial screening for services 3 years ago that was the area with the greatest deficit. He seemingly has made NO progress in his social abilities since that time and in some areas has even regressed. When the Little Man was in the hospital last May, they questioned whether or not he was Asperger's (high functioning Autism). With a heavy heart and a deep breath - I came out and asked his teacher yesterday what her opionion was. If anyone would have in inclination one way or another it would be her.

Her words hit hard, though they weren't entirely unexpected. Hearing someone else echo your deepest fears is not something you ever want to hear. She told me that she was not in a position at the moment to suggest Asperger's - because then the district would have to pay for testing and she can't say that without discussing with them first. She said I NEEDED to follow up on that with his doctor. She also said that if she were to do an assessment on him right now - that he'd be at a 2 1/2 to 3 year old level in social development.

Asperger's has loomed in the back of my mind for over a year. I couldn't pinpoint why it bothered me so bad to hear the words from her. And then it hit me. Bipolar, I can all but cure that. As controversial as it sounds (and if you're in my shoes, you'll get it) I can give him the support and the medications that he needs to get beyond many of the issues that accompany his bipolar. That skinned knee can have a band-aid, I can patch it, it will leave a scar that may loom around, but it's livable. Asperger's? I can't fix it. There is no band-aid big enough to cover that wound. Yes, I can support him and help give him tools to work through the challenges that Asperger's brings, but I can't, no matter how hard I try, make it go away. This wound will never heal.

And Here We Are...

It's been six months since I brought my baby home from the hospital. I would love to paint a picture of roses and sunshine but bipolar does not allow me to do that. There are many times that I feel our life is ruled by this awful curse and that if I could run faster or pull harder we could rid ourselves of it.

The weeks and months after the hospital stay were brutal. He came home overdosed on medications, falling asleep on the path at a park, smacking his forehead from electric impulses that were surging through his brain when we took him off the medications from the hospital. It was all I could do to let him finish out the school year, it was trying at best and he nearly did not make it.

Summer found us moving in a courageous Grandma and her dog, allowing the Little Man to spend his days at home rather than at daycare. By the end of summer, another hospitalization seemed imminent as Grandma, the neighbor children, and I were all battered and bruised. He lost friends during this time and has worked his little tail off to earn them back. It's been a long road but he came out on the other side.

School started in September and we have found that the Little Man THRIVES on schedule and routine. He began to soar in first grade - making huge strides in reading and phonetic spelling. It has been an amazing sight to see, it would be for any mother, but even more so for me knowing what he has overcome in the past year.

His teacher is God’s gift to me. She is my Knight in Shining Armor and appears to be one of the Little Man's biggest advocates. You see, her daughter was in the same hospital as the Little Man last May, they were there at the same time. This gift to me, she does not merely understand what our life is like each day - she's lived it.

I have relished in the ease of the past 2 1/2 months, at times taken for granted how wonderful and almost angelic it has been. Gone are the egg shells, the pit in my stomach when I drive to daycare each night, the anticipation when his alarm goes off in the morning. I no longer have to question who the child will be that I receive, he is happy, he has his smile back, and that laugh that comes from the deepest depths of his core. Unfortunately, these times never last long enough. They are on borrowed time and I never know when they may end.

Two weeks ago, the Little Man walked downstairs and in to the kitchen for breakfast. The first thing he said was "I HATE the smell of the soap in the dishwasher!” That was my red flag, I knew it would be a matter of time before the peace was gone and replaced with fear. He has gone downhill much faster this time around; daycare again is a challenge for him - the lights, the sounds, and the busy-ness of it all. He is having trouble at school, even regressing academically. He is getting placed on a behavior plan and his parent/teacher conference has been replaced with an IEP review.

Yesterday was the worst. Before I even got out of my car the children from daycare were yelling to me all the things he had done to them that afternoon. On my lunch I purchased a new slip cover for the couch. When he got home he sat on it and then said "You bought this at Target. I can smell it." He becomes super-human when he is unstable; he smells things no one else can, he hears everything, and his strength is beyond compare. I couldn't imagine the assault on his body that he must be feeling at the moment.

We go to the psychiatrist on Tuesday, a feat of its own. His psychiatrist recently left the country, now we are left scrambling to find a new doctor. Tuesday I will enter this appointment armed with years of history in hand; hopeful that this new doctor will agree with the other six about the diagnosis – as controversial as it is. Then I cross my fingers that she also agrees with our treatment plan and will make immediate adjustments to his medications. A lot rides on this day – our future depends on it. For now I will dig in my heels and hold on for the roller coaster that we are embarking on.

I’ve never been a fan of roller coasters.

Happy Mother's Day...to the Little Man.

I remember the day I took a positive pregnancy test and the intense fear and joy that came over me all at the same time. There was a little person growing inside of me, I could ask for nothing more - that was the joy, the miracle, the instant love that I had for this being that mere moments before I didn't even know existed. Then there was the fear, the fear of the unknown - what would the future hold for it, would it be a boy and if so - how do you raise a boy, and of course - how do I raise this thing and make sure that it knows that I love it and that every choice is made for it.

I remember the day that the Little Man was born, 8 weeks early, and the intense fear, the fear of the unknown - was he okay, was he breathing, how long would he be in the hospital. And I remember the love - the first time that I honestly understood the phrase "love hurts", because it does. I have never felt a love so strong that I could physically feel the weight of it in my chest.

I remember the day we left the hospital, his father and I, and left him there. I remember the love - the pain and strength that it took to leave him in the care of strangers. And the intense fear, the fear of the unknown - not knowing how this would play out and if he would really be okay.

I remember the first day I had to medicate him for bipolar. I remember the love - the tears that fell as I questioned whether or not we were doing the right thing. I remember the fear, the fear of the unknown as I questioned whether or not we were doing the right thing.

I remember last Monday, when he was admitted - at 6 years old, to the psychiatric hospital. I remember the intense love - as I nearly passed out after they took my child away from me, the pain and strength that it took to leave him in the care of strangers yet again. I remember the fear - the fear of the unknown, as I again have no idea what the future will hold for him. Not just the future 10 years down the road, but the future 10 days down the road. As new diagnoses are tossed around I am left loving him for the brave soul that he has become, and in fear of how this adds yet another challenge to his world.

Little Man, this Mother's Day - I want nothing more than for you to know you are loved. My one wish for your future is that you never question the love that I have for you. Again, we are navigating this wild rollercoaster of ups and downs - you have my love, my support, you fill me with a sense of pride that words can't describe.

As I see you there, in the hospital this Mother's Day, I don't see a boy with problems - I see my baby, my baby who needs help brushing his teeth, who still twists his Transformer undies when he puts them on, who still takes baths and needs his mommy to wash his hair. If I could take this all away from you, I would, but I know (and pray that someday you will too) that this is what is best for you right now. I hope that someday you understand why I can't take you home right now, why you need to be there, and that it's because of that intense love I have for you that I am able to resist the urge to scoop you up in my arms and run away with you when you cry and beg me to take you home.

Little Man - Happy Mother's Day, not to me, but to you, because this is what being a mother is all about and to see your smile again, is the best thing I could ever ask for. I love you, baby.

Visit...Part 2, and other things

Ooops...so much for the blog - has it really been 3 1/2 months since I last posted??? I know you were all just dying for an update because you have nothing better to do than to live vicariously through me.

First and foremost - the visit. The Little Man and his father did see eachother Thanksgiving weekend and it went well. It was odd, being together - as a family. At one point we were asked "and what does your wife do?" On the outside we looked like your typical, run of the mill family - little do the outsiders know it was a court ordered supervised visit.

At first sight I would have loved to see the running, the embrasing, and the tears; none of which happened. I did speak with Daddy-O beforehand and request that if the Little Man mentioned the need to use the restroom that he not offer to accompany him. No need for me to get wrapped up in any negligence cases. We went to the local science museum and the boys played their hearts out, then we went out to lunch and the anxiety got the better of the Little Man and he spent the entire meal laying on my lap on the bench. The anticipation of good-bye was just too much for him.

Since that visit there has been one other - a surprise visit, well planned out by his father and I, but surprise in case he couldn't make it for one reason or another. That visit was pretty wonderful but The Little Man couldn't fight back the tears after driving away - in opposite directions. It really is a lot to expect of a small child who now loses his father over, and over again.

The father and I had a long discussion that night, many tears, lots of heart ache. I'm having trouble getting past loving the man - the man I married, not the one I divorced. He's dating, which is a whole mess of crap for another time. I could stomp my foot and yell that it isn't fair but really I don't have any desire to date for a good long time. My pretend world has us conversing by phone until the Little Man is 18 and then seeing what happens after that. My reality is that he asked me the other day not to arrange any visits for awhile because he's not doing well - ie: don't offer any visits because I'm scared I might harm the Little Man, or you, or both. I know he's going through a hard time, the worst since June 10, 2006; and he's fighting a losing battle convincing himself to keep on living. Every minute of every hour of every day is a challenge right now. He asked me what I wanted him to do - I told him that I can't make that call for him, but that I support any decision he makes. I couldn't imagine living day in and day out with the pain that he does. I can't wrap my brain around it at all. All I can do is be there and to support, and I'm all he has since I'm the only one he'll share with.

Well...that got more in depth than I anticipated; and I'm shocked at the speed of which I whipped that out. Anyway, I'll try not to stray so long between posts from here on out - though that may be easier said than done since I start SCHOOL in mere weeks!!!

Visit...Part 1

Wow...just, Wow.

In 11 days they will see eachother. They will embrace, they will cry, they will walk hand in hand; for the first time in 18 months, that's 1 1/2 YEARS!!! When I think about it, my heart starts to race, my hands shake, and I fight back tears.

The Little Man desperately wants to see his daddy so we (his father and I) discussed it. It's been discussed many times, but now his father is finally ready. I know how hard the first visit will be, and it doesn't really matter whether it's now or a year from now, it will be excrutiating on us all. I took the Little Man to his therapist last week who talked at length to him about what to expect and gave some wonderful suggestions. The Little Man seems to understand what will happen (we'll meet up with Daddy, spend time together at a local science museum, eat lunch, visit daddy's fire station, then WE will go to Grammy's while Daddy goes to his house) but only time will tell how he will truly react.

The therapist visit was tough on me, I tried to disquise my tears and not let on to the Little Man that my heart was ripping from my chest and that my stomach was flip-flopping around like a fish out of water. He asked the Little Man if he wanted to see his Daddy and his face LIT up, he had the biggest smile I've seen in ages. The entire time he talked about it, he smiled; he was almost giddy. He says he won't cry when he leaves, that he'll just be happy.

I want him to be happy, I want it more than anything. I worry what my feelings will be, if I will be happy as well; will I be angry for his father taking this away from us; will I cry at the sight of the two of them together.

This picture is the last that I have of the two of them, it was taken in April of 2006.





You never know when the last time is you will see a person. Take photos, lots of photos, and cherish them.

It's all good!

Sometimes I look at my life and wonder, how on earth did I get here? I think about the drama - both good and bad, and ponder how life could be different if I had made alternate decisions.

There are days when my mind gets stuck focusing on the bad, the ugly, the "made for tv movie" drama that has transpired through the years and I can't help but creep in to a depression. Some days and weeks that depression lingers, it tightens its grip around my heart and I am unable to shake it's hold. The simple tasks of life seem like a hurdle made for an Olympic track star, the dishes pile up, the garbage smells, and the endless loads of laundry grow like an uncontrollable monster. Desperately I attempt to rid my mind of the ache, the pain that is so heavy I feel that I should be able to grasp it in my fist. Some days I don't succeed, but others - I do.

I am so blessed, I have an amazing boy, a wonderful family who has shown their support to be unconditional to the extreme, a job that I am good at and enjoy getting up for each day (alright - not every day, but most). I am reminded of all those positives in my life today, as I prepare to send the Little Man off to Kindergarten. It isn't perfect, I would love to walk him in to school and get him situated in class, to greet him with open arms as he runs off the bus; but I will be there, I will do the best I can with what life has to offer at this moment. While I will not be there with the Little Man in person that day, I will be there in spirit.

On a whim a few weeks back the Little Man and I made our way to his new elementary school. I sat back in disbelief, that this is where my baby is at in his life just stuns me, while he ran blissfully around the playground and the open school campus. Upon entrance to the school grounds, the Little Man spied a pine cone that he had to posses as his own. He clutched that pine cone as we made our way to his classroom, the library, and the gym; he still held firm as he approached the playground with wide eyes. He played for a short while before becoming solemn and the reality of Kindergarten began to sink in. In the style of Audrey Penn and The Kissing Hand the Little Man asked if I would be with him on his first day, this new road he would be navigating in a few short weeks. My heart ached a bit as I took the pine cone from his fingers, and kissed it. After, I asked the Little Man to do the same and we hid that pine cone, where only he would know, so that I can be there with him on that fateful first day.

The Little Man knows of The Kissing Hand and will kiss mine when the mood is right. The significance of the pine cone for him will be immense and will bring him calm in his otherwise unsettled life.

I am so lucky, to have a child that loves with his hole being. That even on his worst days will snuggle in to my lap and rub my cheek, that he will massage my feet if I have a long day, and that when he retires for the night I am who he wants near him.

A great family - check; a good job - check; the most amazing child a mom could ask for - check. I have everything I could possibly need, and then a little more.

Good-Bye IS Forever...

Recently I was able to catch a glimpse in to the Little Man's head, and see how he is processing his life events of the past year - it broke my heart. After a visit at school from his Aunt, and two cousins, the Little Man broke down sobbing when it was time for them to leave. His teacher tried her best to comfort him but all to no avail. His teachers have seen his seperation anxiety from me, but never had they expected it, to this severity, from others in his life. His teacher tried holding him, tried rocking him, tried soothing his aching heart, but there was no amount of comforting that could heal the pain he was feeling that day. It became abundantly clear, after she told him "It's going to be okay, you got to say good-bye and you'll see them again real soon." and he replied to her "No I won't, you never see people after you say good-bye."

I found out about this exchange a week or so ago and it crushed me. At 5 years old, he is yet able to verbally express how the past year has hurt him. We have slowly began working through emotions, most of which are expressed through physical agression (at the expense of myself and his poor cousin), and now it looks like maybe, just maybe, we might be able to remove a brick or two from his wall and begin to help him heal.

Yesterday was a difficult day for him, I thought it might be and tried to prepare myself, as well as him, but I really had no idea how it would all play out. Yesterday was his last day of preschool, not a huge deal for most, but devastating for him. He started at this school in September, a mere month after his family was torn apart, we were living with family, I had no direction for our lives. This school, filled with specialists, small ratios, and the most caring staff you could ever hope for, became our life line. Since the beginning of school we have moved, we have got a new car, I have got a new job (x2), he has started daycare - the one constant in his life has been his preschool. They have been a support to both of us, a soft place to land, a warm friendly heart when we need to be sad or angry, a wealth of knowledge to help us begin life in a new community where we know no one or anything.

After picking the Little Man up from daycare he was so excited; his backpack was filled to the rim with goodies from his school, notes from his teachers, and a DVD of the school year. He begged me to watch it, so we did. We sat next to eachother on the couch while pizza cooked in the oven and we started the movie. At first we laughed, he named all the kids from his class, told me what they were doing in each picture "This was O's birthday party." "This is when we rode the boat in class." "That's circle time."; then he got quiet, and the tears began to swell in my eyes. In a loving, motherly gesture, I lay my hand on his back. The Little Man let out a forced chuckle, then burried his head in my lap, he sobbed, he shook, he couldn't catch his breath, he cried and cried and cried.

I held him there, not wanting to let go, wanting to take away the pain of this sweet, innocent young boy. I know that all I can be is his shoulder, his rock, his soft place to land; I want to be so much more but it's just not possible. I want to make miracles happen for him, I want to rid his heart and his head of sad memories. I sit here, crying, as I write this trying to navigate this new world I find us in, with no map, no direction.

We have a rule, or a code, whatever you want to call it: we don't say "good-bye". For us, we say "See you later" - that simple change from good-bye, to see you later, has worked wonders in the past 9 months to ease his anxiety. Yesterday...he had to say "Good-Bye" and from the mouth, and heart, of one amazing 5-year-old, "...you never see people after you say good-bye." Good-Bye, is forever.

Spirit

This past weekend the Little Man attended a birthday party for a child in his preschool class. The father of this little boy attends every school function, runs games at class parties, and knows every childs name in the Little Man's room; which is why I was so proud when he came and spoke these words to me:

"The Little Man is so great, every time I see him he has a grin from ear to ear and his spirit is contagious!"

It's true that I may have a boy that makes me pull my hair out at times but he saves that for me, to the outside world - he is amazing!

Right now our family is preparing for this years Walk America to benefit the March of Dimes. The March of Dimes funds research for premature birth, something that I would not wish upon anyone.

The Little Man was born two months premature. He weighed in at 4 pounds, 11 ounces and by some miracle, was able to come home at only nine days old. Walk America falls each year just before the Little Man's due date and brings with it a mixture of sadness and joy. It is a time of reflection for me, to see how far the Little Man has come. At 2 months old he had a CT scan to look for seizures, at 3 months he was tested for cancer, 6 months he had his first ambulance ride, and he had surgery for sleep apnea the day before his third birthday. Now at 5 years old he is delayed in his fine and gross motor skills due to his prematurity, he is diagnosed with bipolar disorder, he suffers from anxiety, and he has sensory integration dysfunction.

Each day is a struggle for him, yet you would never know. The Little Man is brave beyond his years...and he has a spirit that is contagious.