Where to begin...

Some days I have a million and one things to write but they are so jumbled up in my mind that I can't find a place to begin. Usually when that happens, I walk away. Today is more or less one of those days but so much has transpired in the past week that I do not dare NOT put fingers to keys, for fear of forgetting something.

Last Wednesday the Little Man was admitted to our local Children's Hospital in the inpatient psychiatric unit. A walk I've travelled with his father too many times is now becoming equally familiar with my son. Ironically, the Little Man was admitted exactly one year and 8 days after his stay last year. It's obvious that a pattern is emerging, one that is being noted and will be planned for come next Spring.

Last year we began at the Children's Hospital but they did not have room for him. He got to take a ride in an ambulance to another psychiatric facility, one that we would come to find was nearly institutional in their approach. May 5, 2008 - that day is painful to me and still makes my heart race and my palms sweat. I can tell you the color of the walls, the layout of the room, what the Little Man had with him. I can picture every minute of it and it plays out in my mind more often than I care to remember, I pray that the Little Man does not share my memories of that night. If it weren't for my sister, I don't know how I would have survived. Obviously the Little Man was terrified of being at the hospital, not knowing what to expect, never spending the night with anyone other than his mother and the few (count on one hand, few) sleepovers with his cousins. He was beside himself in fear and was violent and rageful at the staff. They felt it best to make the break from me and they took him - kicking and screaming for me, taking him through locked double doors to goodness only knows where, while I hyperventilated and nearly passed out sitting at the desk in the pale blue office. I had never met these people, was entrusting my son to their care, and had no idea what to expect in the days to come. Needless to say, we were both very apprehensive when we made the drive to Children's last Wednesday.

In the car I tried to make small talk (choking back tears) - the weather, school, did he have everything he would need. He ignored me, though I did catch him gazing (or was it glaring) at me in the rear view mirror a few times. When we got to the hospital he refused to get out of the car and when he was finally coaxed out - he threw his shoe underneath and ran like a wild man through the parking lot. Eventually I tamed him and we made our trek down a LONG hallway, down the elevator, to what would soon be his new home for days to come.

When the doors opened, we were greeted by the kindest, most respectful staff imaginable. Immediately I felt more at ease as they asked the Little Man if they could get him a snack and acknowledged his anxiety. I was able to spend five hours with him that first day, a far cry from the hour at lunch and 1 1/2 hours at dinner that visitors were allowed at hospital number 1 (while there, they asked me to stop coming at lunch because leaving was too difficult).

This hospital is amazing and they focus on him and his needs, respecting how his mind works and what we know to work best for him. He is not forced to conform in to their way of doing things, they take the time to find out about him and use his skills and abilities and build off of them. Family involvement is the rule, not the exception. I have learned more in the past 5 days in regards to parenting him than in the last 7 years combined. They believe that you can not help the child if the family is not informed and taught the same skills. At seven years old, he can't tell me how to help him, but I can observe him and find out what his triggers are and how to best help him work through those.

Before he can leave I am encouraged to participate in support groups, have a one on one parent support meeting where I can ask questions about specific scenarios that will come up at home. They will help me come up with a picture schedule for him because I now know how very important that is to help him effectively manage his anxiety (as well as his autism).

Last year I felt that we were getting nothing out of our hospital stay and I just wanted my baby home with me. This year, I'm terrified to bring him home. I am not worried about his behavior as much as whether or not I will be able to implement our new skills. This will be a new way of approaching conflicts for us and with time, and a lot of effort, it will be a much more positive way of life for our family.

It doesn't stop there. They are getting us situated with services that he now qualifies for due to his autism diagnosis. Respite care, time for me to take care of...me. Something that I have avoided at all costs because it was too difficult for the Little Man. It will still be difficult, but the results for me and my parenting, will directly impact him.

They are going to help him talk to me on the phone. Separation anxiety tends to rule a lot of our life and the simple act of a phone call with me is more than he can handle. When at the hospital last year, he would beg to talk to me but then become so distraught and angry when I had to get off the phone, hurting people and throwing things - they said he was not permitted to call me. Here, they are encouraging him, creating successful opportunities to practice, providing a coach on the other line so that he can be walked through his coping skills when he does get upset. He is still to scared to call right now, but we are working towards that goal.

Earlier this year his school nurse put him on the phone to talk to me one day. He became so distraught that he shut down, completely stopped responding. It got so bad that I was called to pick him up from school because they could not even move him. This hospital - they care. They understand the importance of him being able to talk to me when he wants and needs to. They don't care about whether or not he talks to me in the hospital, they care about him - regardless of where he is.

If you have never experienced a child with severe separation anxiety, you are blessed. With all that he has, his bipolar, his autism, his anxiety - the one and only thing that I wish he could be rid of is his ability to separate from me. I can't volunteer at his school, I can't take him to Dr appointments in the morning because then he has to drop off different and he won't be able to, I can't go on field trips, I can't talk to him on the phone, I can't leave him at birthday parties, or step into the hall for a private conversation. I would give anything to have no separation issues. This hospital, trying to get him to be able to talk on the phone with me - it brings tears to my eyes that they care, and no one has cared about him in that way before. Sure they care at school, but what happens at home...if it does not affect them, they don't worry about it, we're on our own.

He is half way through his stay. I hope that I can learn as much in the 2nd half as the first. If even a little more is learned, I feel like we will be much farther ahead than we were last week. I know it will be difficult, challenging at best, but now I feel like I can see a glimmer of light. It might not be the end of the tunnel, but maybe this tunnel is turning a corner, we're on a new path, heading in a better direction. Walking on to the unit last Wednesday, the doors opening before us, was a new chapter in our lives. Maybe I am hoping for a miracle, for a new child to await me come Friday afternoon. I hope that I am realistic in my hopes for the coming weeks. Even if small steps forward are made, rather than giant leaps, I will be grateful.

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.

Updates...

After my lovely post on ESY and my Victory, they tried to burst my bubble by denying him anyway. I got an email a few days later saying that they indeed were too late and that there was nothing they could do, classes were already formed and there was no room for him in any classes. Humph! I wasn't taking that one sitting down.

Thankfully I had done my homework before my meeting with the team. When I got the email saying that he was not going to be in ESY, I immediately pulled out my original proposal (and added item 3 of the state law about the team needing to agree that it was necessary) and shot off an email to the Head of Elementary Special Education for our district. I cc'd his teacher, the OT, and the school psychologist, I was using their names and felt that it was the least I could do to let them know that I was fuming mad and was going to put up a fight. I sent the email around 8:00 pm, then I had to sit back and wait.

After a suggestion from a friend, I left a voice mail for the Head of Sp Ed the next morning, letting her know that I sent the email and was looking forward to speaking with her.

I heard nothing that day. I would be lying if I said I wasn't nervous. I hoped that it was good news. I was hoping that my reason for not hearing anything was because she needed to get her ducks in a row before speaking to me. As it turns out, I was right.

It was not until the next day but I finally got a phone call, and an email. Yesterday I signed the paperwork for the bus to pick him up at daycare. We're officially a done deal. WooHoo! One big hurdle off my back.

Last week, in the midst of fighting for ESY, I got the results of his Asperger's assessment. I've written before about my hunches regarding Asperger's and the Little Man. I was kind of right, and kind of wrong. He got a diagnosis, but it wasn't Asperger's, he actually got diagnosed with Autism due to a lack of eye contact which pushes him over in to the communication side of things and warrants a full Autism diagnosis. Though this has been in the back of my mind for years, actually hearing it from a professional - it hurt. I cried long and hard but then realized that he's still the same boy he was the day before. Nothing has changed, he's still my Little Man.

We ended the week with a short vacation away. A trip to the beach with family that was wonderful. It was much needed and could not have come at a better time.

Victory!

I have been asking all year about ESY (Extended School Year) for the Little Man. Each time I ask, they shrug it off or flat out tell me he will not qualify. I have felt since the day he started first grade that he would benefit from, if nothing else, the structure and continuity of ESY. Granted, that's not what it is supposed to be for, but I felt that in his interest, it's what would be best for him.

In February, at our first tri-annual meeting, I again asked and was told no. On April 1st I again inquired, and was told no - after just being handed test results showing him to be at Kindergarten, zero months in math and that his fine motor skills are at a >4 year old level. Even with that knowledge in hand, they still insisted that he did not warrant ESY.

I called for a review meeting. I have spent the past 3 weeks doing research at all hours of the night. WISC, EALR, WAC, BASC, FAPE, ESY - I feel like I know these things like the back of my hand. I typed up an agenda for MY meeting and sent it to his teacher last week as not to catch her off guard. I outlined what goals needed to be addressed, where changes needed to occur on his IEP, what options I felt needed to be on the table for the coming school year, and I plainly added that I wanted him to receive ESY.

The IEP review was today. I brought with me my own notes on my reasons why he was due ESY: 1. Multiple unmet IEP goals, 2. Significant delay in math, 3. Three year delay in fine motor, 4. Probable regression over summer, 5. Slow recoupment in the fall, 6. Less likely to catch up as he ages. I quoted items 2 and 5 of the WAC 392-172A-02020 on Extended School Year Services and how they would apply to TLM. I brought work samples from this time last year in Kindergarten with comparisons of now. I was armed and ready.

We went through my concerns, each specialist had highlighted on their copy of my agenda, the areas that directly affected them. They commented and gave feedback, and commended me for my active role in his advocacy. Not one mention of ESY.

It was nearly time for class to start, children were buzzing around in the halls, and the team began putting their notes away. I was taken aback at first but knew I had to step up and take a stand for him. I politely reminded them that I wanted to discuss ESY.

At first they appeared flustered. I calmly pulled a writing sample out of my notebook and laid it on the table. "This is his writing in March of last year. It is hand over fist better than this year." That was all I said, I left it at that. His OT was the first to speak up, she said that she had similar work samples from Kindergarten and that I was right. Then she said that she also felt he needed ESY. At that point his teacher mentioned that proposals were due to the district three weeks ago (the week that we had our last meeting, when they all agreed that he did NOT need ESY) and that it was too late, even if we did feel he should have it. The OT was the first to speak again. She said that she works OT in the summer and knows that proposals come in late all the time, then she said again that she felt he needed it. His teacher seemed reluctant but agreed. She said that it would take time as she needed to speak with his Kindergarten teacher and find out where he was last year to get an honest feel for where his regression is. Then it was the school psychologists turn. "We have proof right in front of us. Put it through for writing, we'll take care of the details later. He NEEDS this." I tried to hide the smile on my face, and to fight back tears, as I knew that they finally got it. My son became more than a number, more than a dollar sign...he got the validation that he deserves.

And that's how I got ESY for TLM!

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.