#FREETHECAT

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  We moved from Alaska to Grand Junction, Colorado because the agencies that had been supporting The Cat (my autistic daughter) removed support last October.. My father grew up in Colorado and we still have family here, so it seemed a good idea. My father and I flew down and spent 2 weeks on the ground in Grand Junction to be sure it would work. Specifically we talked to Sherry Schreiner, the special ed person for district 51 because in Alaska The Cat was having 3 or more episodes at school per week that required physical intervention. They assured us they could handle it. They approved the IEP and behavior plan from Alaska.

  Our first indication there was a problem was The Cat's first meltdown when the called the police who arrested The Cat and put her in handcuffs (in the midst of her meltdown she struck the officer with a book).

  Things went downhill from there. The school tried to change The Cat's disability and re-write the IEP. When I our daughter didn't go along, the next meltdown The Cat had they suspended her, eventually for 10 days which meant a manifestation hearing to determine whether The Cat's behaviors were related to her disability. Before the hearing we got a document from the district detailing events with Expelled written across it.

  When we walked into the hearing the document of the hearing had already been filled out including the finding that her actions were deliberate and intentional and not related to her autism or explosive disorder. We went through the motions, but in the end all they did was sign the document they brought with them. At the end one of the District 51 people said that they could not find that The Cat's behavior was related to her disability because that would give The Cat carte blanche to be violent and destructive. Sounds like the decision was related to the district 51 needs and not The Cat's disabilities.

  We have filed an appeal called "due process" When this started the local disability law center said they would represent us if it came to that. When we went there for help there said they lacked the resources. I checked with the state disability law office in Denver and got the same response. We've contacted all the local disability law firms we know of and some in Denver - they replied that they cannot take us on pro bono. One firm recommended by a friend wanted $30,000 and said we would be fools to try to represent ourselves in a due process hearing.

  The district decided to proceed with expulsion. We went to the hearing and lost (we still have the due process hearing). I got the notice today that The Cat has been expelled for 1 year. That is on hold until after the due process hearing.

  We have a mediation hearing. Monday, but the district's attorney said they will not change the manifestation hearing results.

  The school district filed a police report and the DA says that unless The Cat admits what she did, expresses remorse, attends a class and works off damages they will press charges and take her to court. If she loses there she is looking at up to 18 months in Juvie. The Cat is 11.

  We have filed a complaint with the State of Colorado, but that will not help us or The Cat now. The whole thing hinges on the districts desire to criminalize The Cat's disability.

  I know this isn't right, but we all know cases where right looses to might.

A Dog for the Cat

The Cat is an amazing little girl with Asperger's. She has really had a rough go of it lately. She had some bad reactions to meds, and some bad meltdowns. Three days before Christmas I had to make the decision to have the Cat hospitalized. Her behaviors were out of control and try as I might, I just could not keep her safe at home. It broke all of our hearts to make that choice. We were concerned that we may have to send the Cat out of state for long term residential treatment. However with a med wash and some changes at home things are looking up. We will be bringing the Cat home soon.

We are not out of the woods yet. Asperger’s isn’t something that will just go away. But there are ways to make it easier for her. We have made the changes that we can. We now have a visual schedule app for her daily routines. We have slimmed down our expectations, and made it easier for her to keep her environment clean and organized.

We have done what we can at home. But going out in the real world is something we can’t control. Going grocery shopping causes the Cat a lot of anxiety, riding in the car is hard on her ears. School is challenging, but manageable with lots of supports. There is something that can be done to help the Cat navigate these places.

A service dog would help her be able to better navigate her world. The dog will help her navigate social settings, help soothe anxiety, and be a constant companion. There is a safety aspect as well. The dog would be trained to track the Cat as she is a known runner. A service dog would be able to accompany the Cat wherever she goes, school, the store, airplanes, doctor appointments. The Cat would gain a level of independence that she will not have otherwise.

Right now because of her running and SIBs the Cat cannot be left alone, she needs constant supervision. With a service dog, the safety risks are minimal. The dog will be able to help calm the Cat when she is getting agitated, to provide deep pressure and sensory input, to lead the Cat away from environments that are over-stimulating. This dog will change her life.

We have found a wonderful puppy that will be trained to meet all of the Cat's needs, and a wonderful training organization that is free of charge. We are just looking for some help with the upfront costs. Please whatever you can donate will be so greatly appreciated, and will make a true difference in the life of this sweet girl.

Click here to support A Dog for Cat

Email to the Politicians

I have written a lot lately on the Facebook page that accompanies this blog about the struggles we have been having in the Cat house. Lots about my feelings of being trapped here. Lack of support or services, lack of help, lack of progress.

I quickly got tired of sitting around feeling like there were no options, nothing I could do. So I wrote an email to my state legislators, Rep. Dan Saddler and Sen. Fred Dyson.  Here is the e-mail:

Dear Sir,

My name is A.  My daughter the Cat was diagnosed with Asperger Syndrome in September of 2012. It was a long road getting the diagnosis and it has been a longer road trying to get her the services she needs in order to make progress. Cat would benefit greatly from intensive Applied Behavioral Analysis (ABA), in home support and care, home modifications, and respite care.

The Cat started struggling with her behaviors at home and in school during 2nd grade in 2011. We tried many things to help manage her behaviors including the Anchorage School District’s Creating Successful Futures program. Ultimately we received a referral for neuropsychological testing which gave us her diagnosis. Since then the Cat's behaviors have continued to escalate, affecting her at school, her development, and her quality of life.  She has a history of self-harm. My parents and I spend most of our time walking on eggshells trying not to trigger a meltdown. Screaming, throwing things, hitting, spitting, choking herself were almost daily occurrences.  Because of these violent blow outs, The Cat could not be in an after school child care program and I have been unable to work for the past 2 years living on public assistance and social security.

After receiving her diagnosis I met with staff at FOCUS, Inc. and began the process of applying for the Medicaid waiver, with the first step of gaining Developmental Disability Eligibility.The Cat was denied, because at this point I did not have enough supporting documentation to display her developmental deficits.

In the almost 2 years since receiving her diagnosis, I have enrolled the Cat in physical therapy (PT), occupational therapy (OT), and speech therapy (SLP). I have received a copy of the neuropsychological evaluation completed by Dr. F, I got copies of all the records from all of the evaluations I had done, and applied again. The Cat was denied for the second time, claiming she did not meet the criteria and was not delayed enough in enough areas.

In October the Cat’s behaviors and challenges became so severe that even with medication I had to have her admitted to North Star Hospital for inpatient treatment. I am the only one currently providing care for my daughter and I am suffering from burn out.

Asperger’s has presented the Cat with many difficulties. She cannot bathe herself without step by step direction and help to rinse her hair. She cannot brush her own teeth. These are a result of a lack of executive planning function in her brain and general low muscle tone. The Cat cannot tie her shoes, button her blouses, or brush her own hair. All of these are fine motor issues. She is unaware of potential dangers around her and will walk right out into traffic. Still the Division of Senior and Disability Services say she is not developmentally delayed enough. I am watching my daughter slowly slip further behind her typically developing peers.

I have applied and been denied a total for 4 times for DD eligibility. We are told repeatedly that  the Cat is not delayed enough in enough areas to qualify. The organizations helping me to apply tell me to wait 3-4 more years, because the differences will be more apparent. I cannot sit and watch my child slip away for another 4 years without doing all I can to help.

With ABA and other services,  the Cat could learn to cope with her meltdowns, learn more acceptable replacement behaviors, and how to care for herself. In home care and services would allow me to go off of public assistance, go back to work, and  the Cat would not have needed in-patient treatment, saving money all around. The cost of 1 year of public assistance benefits and residential treatment versus 1 year of ABA is nearly double ($65,758 vs $37,576. $720/m ATAP, $438/m FS, $258/m SSI, $48,766 North Star 1 year. 671 annual hrs. @ $56 an hour) (personal benefits, Autism Speaks write up AK SB 74 passed 2012).

I know that my daughter has a chance to become a fully functioning member of society with the proper supports and interventions now. Research and best practices all support that early intervention is vital when working with children on the Autism Spectrum.

I am hoping that you will be able to offer me some assistance in gaining the DD eligibility, and the Medicaid Waiver, so that I will be able to once again become self-sufficient, supporting myself and my daughter.

Thank you for any help and advice you might be able to provide in this matter.

Sincerely,

A

***Names changed to protect anonymity

Today I heard back from one of Rep. Dan Saddler's aides. She gave me a lot of information and I am working on a second post to disclose that information. The point here is to let you know that you do have options, please do not give up.

Talk to y'all later.

Our Reality

Today we are missing the sunshine and roses. Today there are no unicorns and rainbows.

We have yelling, screaming, SIBs, and threats. We have tears, cursing, stomping, and destruction.

Today we have no where to turn. There is no one to call, no service available. Unless we want to go back "there". The Cat has been discharged from the only services she received. Its not their fault. They were great. But they are  not designed to provide therapies and other services for kids on the spectrum. They can help with behavioral health. They did the best they could. The Cat just needs thing that they cannot provide.

There is no emergency agency to call, to say "I need help" "Things are bad" "I do not know what to do".

There is no counselor or therapist I can call on Monday. They all have waiting lists miles long. I could call her doctor, but that would just mean more meds. I do not want to medicate her into oblivion. I want to know how to help the Cat through this. I want to teach her ways to cope.

There is opening a new Autism unit. But I do not know that it is any good, or even open yet. The last time she went there, she came home with more ideas. She lost a piece of herself, it won't come back. But it might be my only option.

The fact that there are not enough services, that we can't help families in crisis. This is not ok. We need to do more. But that doesn't help me now.

So what do I do? How do I get through this? I know by the end of the night we will be collapse into a ball of tears and exhaustion.

The Cat will fall asleep, after more tears, anxiety, and SIBs. I will struggle to find the strength to get up tomorrow, hoping, praying that something will "go right", that it will be a little easier. Wishing for the Cat to have a good day again, to find some peace and happiness.

Maybe tomorrow will be a better day. Maybe tomorrow we won't need the respite that we don't have. Maybe tomorrow I will find the rainbows.

But today, I cannot find them. Today I need the help. Today is not a better day. Today there are no rainbows. The clouds are hanging low around the Cat House, and there is no help or rest for the weary.

Autism Awareness

Autism Awareness Month? Day? How about life.  ALL DAY EVERYDAY!! (This is going to be long so bear with me)

This week has been rough. I mean brutally rough. ROUGH.

Monday started the week off with a portent of things to come. A preview that this week was going to be filled with contradictions. Week of such lows that I am unsure we will find the strength to dig our way out, and then such joys that you wonder why the lows have to come at all.

I am not talking about the highs and lows of bi-polar (although I know all about those too). I am talking about how one minute my little Cat is happy and excited, ready to take on her day. So thrilled to show off to her teacher a new skill she mastered over the weekend (spitting out her toothpaste without prompting). And by the end of the day I am getting a call asking me to come help calm her down.

Yep you read that right. Owl Park called me to come help calm the Cat down. This is a first. I know something has to be terribly wrong. The staff at Owl Park call or email me after the fact so that I know what happened and how things were handled. There has never been a call to come help calm her down.

Of course I can't drive because of my stupid shoulder injury from the car accident, and there is no one home to drive me in. I quickly make some phone calls and the Cat's AT Miss Amazing is able to go in and help (THANK YOU!!).

In the meantime I am back on the phone with the school and the principal Miss Understanding. I learn that the Cat has shoved a table into the wall. INTO, meaning there is a table sized hole in the office wall. She has been hitting herself, punching teachers (PUNCHING TEACHERS WTF?!?), and banging her head on the glass window. Screaming to be suspended, "Bird Lake suspended me for nothing, why won't you fucking suspend me?" "I want to go home! You all hate me, f*@#% b@%*#!" (Yes my child has a mouth on her,  not sure if I should be embarrassed or impressed.) Miss Understanding tells me that she probably would have suspended the Cat for the destruction and violence, but state testing was coming up and she knew the Cat needed to be there. (See why I love the staff here??? They totally GET IT!!)

Miss Amazing gets to the school, calms down the Cat, and stays for the rest of the day. The afternoon AT session goes really well. Not sure what set this off, but one bad day we can handle. Maybe it's anxiety over the state testing coming up on Tuesday, Wednesday. and Thursday this week.

Tuesday seems to start off awesome. I get a call from the school and my heart skips a beat. Its a good call though. The Cat has finished her reading test and did so well she got a journal as a prize. She wanted to call me and tell me all about it! :-) The rest of the day seems fine, no incidents (that I know of) and the Cat says she had a good afternoon. Her session with her CM goes well and all seems smooth. The Cat seems a little tired, but I assume its just been a long day with the testing and then session. No Big.

I get an email that night that the afternoon was wrought with challenges. Meltdown Cat reared her head and was using foul language again, throwing things at her teacher, and screaming. She did manage to calm down and make it through the rest of the day.  Ok, not great news but hey at least I did not get a phone call. We talk about better coping skills and move on. (I don't try to push much about behaviors at school. I back the school up, but when we get home I don't dwell or double punish.)

Enter Wednesday. I was expecting it to be a tough day for the Cat. It's the writing testing day. The Cat struggles with writing. I tried to make the school aware. They felt prepared. We talked about taking breaks when stressed or frustrated. We talked about different topics that might be on the test. We practiced brainstorming, organizing, and webbing. We did social stories about asking for clarification. We all felt as ready as we could.

The Cat gets through the testing. WHEW!! We are out of the woods.

WRONG!!! Just as I am getting ready to leave to go pick her up I get a call. The Cat has slammed her teacher's fingers in the door. Miss Patient has to go to the hospital and I need to come get the Cat.

She did WHAT?!? My mind just goes into shock. The Cat has never displayed this level of violence. NEVER! WTH is going on with my little Cat??

I am out the door! Get to the school as quickly as I can. The Cat is in a small room by herself with a staff standing right outside. I watch from outside as I see my baby wrought with a level of emotion I have never seen. She is tearing the room up. She has locked the door (staff have a key), pushed all the chairs and the table against the door so that people can't come in. The Cat is ripping at her hair, scratching at her face, pounding her head on the floor.

Miss Understanding leaves Miss Patient with the Nurse and lets me in the room. ( I promise there was a staff right outside the room while the Cat was in there alone.) I go to my Cat and try to talk. She looks at me and rages higher. I have not seen things this bad since we left the hospital. I try to touch her. She bites me. She bites herself. She spits in Miss Understanding's face. Miss Understanding let's me know what the plan will be for the rest of the week. This is serious. We all know that. This can't be ignored. There has to be a consequence. The Cat will be suspended for 1/2 day on Thursday following the testing. I will get a call when she is done and I will go pick her up.

I am trying to see if I can get her 1:1 support back for Friday and next week. We are all hoping that we don't have to start over from square one. Or consider other options. We have a meeting on Monday to look at a safety plan, and support for the rest of the year (about 6 more weeks).

The Cat finally calms down (read shuts down). We leave. We head to OT but the Cat is non-responsive. She is silent the whole ride. She is just gone. Withdrawn into herself. The storm that raged pushed her so deep that for almost 3 hours she was a shell.

I get one more call from Miss Understanding, the school has cleared out, Miss Patient has left for the hospital and she has a little more time to talk.

THEY ARE NOT GIVING UP!!! THEY WILL KEEP WORKING WITH HER!! WE ARE A TEAM AND WE WILL GET THROUGH THIS!!

I love this place. In the darkest place I have seen my Cat, they are a shining light saying "We will help. We are not giving up. We will figure this out. We are a team and we will work together."

I may feel like a total failure. Like I am losing my baby. Like nothing I do is enough, or is wrong. But through it all I have found a school that cares about my Cat. That is willing to work WITH us to help her. A place where she is safe, even from herself.

THAT IS TRUE AWARENESS!!!

What Autism "Looks" Like

I know you have heard it...

"He's autistic? Are you sure? He doesn't look autistic."

That line... OMG how much I hate that line! How do you know what autism "looks" like?

Can you really tell which child in a group of children has autism and which one doesn't?

Let's test that theory.  Here are pictures of children, all shared with permission. Pick out the one with autism.

All these beautiful smiling faces. Which one has autism? Can you find the one? 

PSST I will tell you a secret... It's all of them. All these wonderful children fall on the spectrum.  Where doesn't matter, it's not the point of this post. What matters is that I bet you could not tell.

Here let's try one more bunch. Which of these children is on the spectrum?

The answer? None!! None of these kids are on the spectrum. Do they look any different from the kids above? 

Nope!! 

Wanna know why? Because there is no "look" to autism.

You can't tell if a person is a drug addict, or a thief, or a rapist by looking at them. You can't tell is a person is a judge, or a student, or an athlete simply by looking at them. So why would  you think that you can tell someone does or does not have autism by looking at them?

We as adults try to teach our children not to judge people based on how they look, the color of their skin, the clothes they wear. And then someone says that your child "doesn't look autistic." What message does that send? It is still judgement, based on looks. It's the same damn thing!

Don't do it! If you have questions about autism, ask us! 

We are happy to educate you. We will do it nicely when you ask. We are likely to lose it all over your pretty designer shoes if you come at us with a line "She doesn't look autistic."

With the new numbers released by the CDC yesterday, 1 in 68, chances are autism has touched your life. You may not know it, but chances are autism has touched your life. It could be a close friend. It might be at work, or church. Maybe the checker at the grocery store, or your accountant. 

 When a parent comes to you and says "My child has autism." The last thing we are looking for is your judgement. They are looking for understanding. We are trying to explain behaviors in public. If you feel awkward and do not know how to respond then don't. Trust me, we will appreciate the moment of quiet in our lives.

BOTTOM LINE: You can't tell by looking at them. And even if you could does that make them any less worthy of your time? Your acceptance? Your attention? NO!

Just think before you speak ok?

When Parents Become the Problem

I know, I know. Those are fighting words and y'all are probably screaming at me in your head, but hear me out.

Have you ever wondered why the schools keep trying to short change our kids? Or get away with violating rights? Don't they know that we are educated and we will fight like angry grizzlies to protect them? We won't back down and we won't five up until we have proven that our children need these services and cannot be written off. So why do they keep trying?

ANSWER: Because there are some parents who won't fight. There are parents who don't know their rights. There are parents out there that just trust the schools. Y'all know the ones I am talking about.

These parents are happy to complain about how their precious child is not receiving services. They will ask you how you got those services for your child. They will ask you for help. They will ask you to go to meetings with them.

So we (the awesome experienced sped parents that we are) will help them. We will tell them how to get private evaluations don. How to get the school to agree to evaluate. We will tell them what steps to take, from the initial meeting to the due process hearing.

And what do those parents do?

They look at us like we are speaking a foreign language. Then comes the real kick in the stomach. "I can't do ALL THAT."

ALL THAT?!? ALL THAT?!?

Homey,  that is what your life is going to become. That is the club that you have joined.

IEP meetings, phone calls from the school, evaluations, therapies. These are the days of our lives.

WELCOME TO THE CLUB!

Yes it is a lot of work. No, it will not be easy. Yes, it might get better.

How?

By educating yourself about your rights, and the rights of your child. By showing the school enough evidence they can no longer deny services. By standing up and saying "NO! I will not let you do this anymore. I will fight back."
But there are parents who will not do this. They will talk in circles. They will think "OH, I will just wait. They will see. If I talk enough they will agree. I don't need to try, it will come."

So what does that mean for us? The parents who gear up for our meetings, who know that getting services can be like pulling teeth.

It means that those parents have become the enemy.

They may ask for our help, but they don't really want it. Sadly, there is only so much we can do. We cannot make these parents want to fight for their kids. We cannot go fight for them.  If they wont help themselves, won't avail themselves of the organizations that are out there to help, there is nothing we can do.

Much as you may want to if a person is not willing to put in the effort then you cannot make them.

And as long as those parents are out there the schools will not change.

And that hurts us all.

So my advice? My two cents on the subject?

To the parents who fight, the ones that are willing to do the work. CONGRATS!!! Keep up the hard work. Give yourself a pat on the back.

To the patents who want to ask for my help, and then not do anything, the parents who say "I can't do all that." Don't come complaining to me! I don't want to hear it. I have enough going on in my life, enough of my own battles. I cannot fight yours too. If you don't want to listen to what I am saying, to help yourself, then don't come and expect me to do it for you.

Harsh? Yes, probably.

But guess what guys, nothing is going to change until we make it change. I think its time for some tough love. Step up and help yourself, or don't. But if its "too much", or "all that", then find the door because I don't have time for you. If you want my help, I will help. If you actually want to make things change, make things better, I am here for you. Otherwise, keep it out of my life.