Unintentional Lessons

So we all know that our children remember everything. Absolutely everything! And they will repeat it back to us or others at the most unfortunate times. Like bathroom stories retold at church. Or stories about our private lives shouted out during parent teacher conferences.

Well a few years ago the Cat was told by a friend about some abuse going on in her home. This friend was removed from the home and placed in another setting with family. The loss still haunts the Cat. And she remembers this event in VIVID detail.

An unintentional lesson was ingrained in the Cat at this moment.

Fast forward to present day. The Cat suffers from severe separation anxiety on top of her others challenges. So being away from me has been hard on her. It's been tough on me too, but we both know why she is there. I know I made the right choice, regardless of how much it hurts.

So the Cat doesn't want to be in the hospital anymore. She wants to come home. She tells me this everyday. Multiple times a day. It is not time for her to come home yet. She needs to get stable and learn some coping skills.

Apparently this does not coincide with the plans the Cat has. She decided she would take matters into her own hands. She was on an elevator with a male staff person. There are cameras everywhere in the hospital, to protect both the patients and the staff. The Cat starts screaming "STOP TOUCHING ME!"  Repeatedly. Nothing is calming her. Until the staff points out the camera and explains that the tape sees that no one is touching her.

This is completely new. The Cat has never done this before. EVER. So I a wracking my brain trying to figure out why she would do this. Is this some new symptom of behaviors? Is she having hallucinations? Was there something bugging her sensory wise that she couldn't express?  Where did this come from?

Remember that unintentional lesson... YEAH... not good.

The Cat remembered that lesson. She knew that when her friend said someone was touching her she got to go somewhere else. So in the mind of the Cat if she were to say someone was touching her then she would get to leave. She would get to come home. Understandable logic in her mind. Totally inappropriate to us...

So what do I do now? How do I get her to understand that she cannot do this?

So what now?

After all the talk about what happened last week I am left with a question...

What now??  I know it was a recurring question during the previous blog. What do you do? What happens next? What now?

Well for me the next step was to take time to process everything that happened, then start planning for when the Cat will be released and come home.

Any of you who have been following me for a while know that I have my reservations about the Cat's school. About the sincerity of the PTB in charge. The solution of the PTB when the Cat blows out at school is to have the in-school support leave the room and then call me and discuss suspension. From the mouth of the PTB after Wednesdays incident "Well since she is in the hospital there is no point in suspending her this time." What does that teach the Cat? What does she learn? Not how to cope or manage her triggers and blow outs, instead how to manipulate the system to get out school when things get too hard.

This is becoming a regular pattern. And it pisses me off.

So what now? What is next?

The first step is to notify the PTB that I have concerns. So yesterday I wrote an email to the school and let the PTB know what my problems and concerns are. Then I sent an email to my support team AYFN and AK Child and Family (seriously if you are local and in need of support for you SN kiddo call these people!).

AK Child and Family and AYFN were the first to get back to me and we set up a meeting to discuss what the next step is. I want to discuss their feelings about the school and other possible placement options. I want all of us to get on the same page and I want to discuss what the plan will be for follow up after the Cat is discharged.

Then I called the PTB at the school. After the last email encounter the PTB asked that I call when I have a problem. So I did. I went through everything I had included in the email and asked to schedule a meeting with the PTB and someone from the district to discuss placement options and programming. The PTB was surprisingly receptive (based on past interactions) and included me in an email to the district asking for a rep at the meeting. That meeting has not been scheduled yet as we are still waiting to hear back from the district.

I am waiting to see about scheduling a meeting with her treatment team at the hospital to discuss a treatment plan with them.

My hope is that by the end of next week I will have everyone on the same page. Somewhat. I will still need to have a transition meeting with the staff at whatever new school we decide on. But that will have to happen after we choose a new placement, and we meet to review the IEP and FBA. Also it will have to wait on the hospital. We have to see how things go and when we will have a discharge date.

That's what comes next for us...

What comes next for you??

Things we aren't supposed to say

There are things that you are not supposed to talk about when you are an autism blogger.

You aren't supposed to talk about how hard some days are. Or the fact that your child will occasionally hit you, or others. Sometimes that aggression gets so bad you just don't know what to do. Sometimes you are left with bloody noses, black eyes, bruises. Sometimes the child has all the bruises.

So when that happens, what do you do?

You aren't supposed to talk about those things. The readers don't want to hear about your struggles. They come to you so that they know things will get better. They read your blog to hear about all the triumphs that they can look forward to. To hear about the fact that even though things are tough after the initial diagnosis, there is an upside. They want light, and humor, a small grain of truth every once in a while. But readers don't want the struggles.

So what do you do?  Who do you lean on?

I say to hell with what we are supposed to talk about! I say that sometimes the readers NEED to hear about the struggles, need to know that they are not alone.

What do you do when as a parent you are faced with making some of the most difficult decisions for the sake of keeping yourself or your child safe? Whose safety needs to come first? So I am going to share a story that I am not supposed to talk about... Because this is for me, and I need to talk to someone about it.

Wednesday night I made the hardest decision of my life.

A couple of days ago I posted on my Facebook page about struggles the Cat has been having behavior wise. I asked those following the page to share and also to offer any advice. I got no responses. That happens, move on, not the point. The point is that her behaviors continued to escalate. She was choking herself, throwing punches at teachers and other school staff, hitting herself, hitting me, biting, throwing things at people. It was not pretty and it was not getting better.

Her meltdowns have been getting worse. More violent, longer duration, more frequent. She is not getting the support she needs from the state. That's another blog. She is being denied the support she is supposed to have in-school. The PTB solution to her meltdowns at school? Kick out the in-school 1-on-1 support, call me, and suspend (or threaten to suspend) the Cat.

So what do you do?

I did what most of you would do. I called her doc and tried to get an emergency appointment. Well wait he has suddenly dropped all of his Medicaid patients.

So what do you?

I met with her behavioral health case manager. I spoke with the patient care coordinator at the new docs office. I spoke with her AT providing in-school support. I spoke with my advocate. I spoke with her OT. They all told me the same thing... In-patient treatment would keep her safe, keep others safe. They would be able to monitor her meds, adjust the meds as needed. She will learn coping skills, and she will stabilize.  This is what matters. That is what is most important.

So what do you do?

I did the only thing I could do when faced with such a decision. I listened to the team of professionals I have assembled together to help the Cat. Wednesday night I had the Cat admitted for in-patient treatment.

I have felt so empty and so alone ever since. Everything I did revolved around her schedule and her needs. That happens so often to us I know.  I reached out to a few of my favorite autism pages on Facebook and found good support and suggestions for how to move on from here.

So the point of all of this?? You are not the only struggling. I know there are tough choices out there that have to be made. I know that autism is not all Carly, Temple, and Sparks. I know it gets ugly. It is rarely sunshine, rainbows and roses in the beginning. BUT YOU ARE NOT ALONE!! I was not alone Wednesday night, or yesterday. And you are not alone either. We all know the dark side is there. We just hide it well with lots of wine and sarcasm that our children don't catch.