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.

The Surgery

Who doesn't know that the Cat had surgery on the 10th? Anyone?

We have known about it for a while. The Cat has been anxiously awaiting the day. And by that I mean that with each passing moment her anxiety was building until it was bound to explode. Boy did it. All over the check out lane at Fred Meyers on the 9th. And all over me, and Grandma Fuzzy, and Grandpa Musher. Everything that was said to her that day set her off. It was meltdown central here for about 9 hours. Seriously I think Hiroshima had less damage. By bedtime that night we were all so totally DONE.

And just think, the Cat, Grandpa Musher, and I all had to be up by 6 for her surgery. Needless to say, with all the anxiety, there was not much sleep to be had. I didn't even try to fight it. I knew I was beat. I let her stay up and FaceTime her cousin, jump on her trampoline, watch movies, anything that kept her happy. Winx Club was my saving grace that night.

Come morning things were not much better. The Cat was exhausted and wanted nothing to do with leaving the house, much less anything coming out of my mouth. YAY!! We got to the surgery center at 7 for an 8 a.m. procedure. 

 new jammies for recovery. purple and fuzzy

after the sedative waiting to go to the OR

The staff at Alaska Surgery Center were so great with her. I explained to them my concerns about the mask for the anesthesia with the Cat's sensory issues. They gave her a mild sedative before taking her back into the OR. They waited to start the IV until after she was out.

The surgery itself was a breeze. The Cat came through it like a champion. She woke right up afterwards and was ready to go home about an hour and a half after that. We were out by 10:15, seriously that quick. It was great!

in the recovery room 

We got home and that is when the real fun started. The doc had given us a script for painkillers, and told me to alternate between the script and the OTC every 3 hours. No big deal right... NO!!! I had to wake her up every 3 hours all night long. And the painkiller taste horrible, so getting her to take them has been a battle.

She was so mad at me for making her take the meds that she refused to speak to me. She started texting me. Now I know that her throat hurts, making swallowing difficult and that plays a part in not wanting to take the meds as well. But here's the thing. I have never had to fight with the Cat to get her to take meds. She has always just taken them no problem. I consider myself very lucky for that. Now I have to almost hold her down to get them into her. 

I would just let it go, but without the meds she is screaming in pain and completely uncontrollable. There have been more than a couple of meltdowns from the pain, the "glob" in her throat that won't go away, the taste of the pain meds, and trying to get fluids into the poor child. My heart breaks for her it really does. But what else can I do?

Luckily today she started to feel better... It's back to school on Tuesday

And then it's a mini staycation for me!!!

The Re-Model

I did it!! I got the re-model done before the Cat had her surgery.

She loves it!!! It was a HUGE success.

There was a long process in the re-model. I wanted to give the Cat a fair amount of autonomy in making decisions regarding her room. I mean it is her room, and the point of this endeavor was to make it more friendly for her. So it makes sense to allow her to make most of the decisions.

The first thing we had to do was pick a color. The Cat is fixated on purple. Everything has to be purple. Her pajamas, her cup, her tent, her sheets, her toothbrush, shoes, snowpants. All PURPLE. So what color is her room?? Take a guess... Any guess... I will give you three chances...

Yes it's PURPLE... GOD SAVE ME FROM THE PURPLE



Once we had the color chosen came the monumental task of cleaning the room. I know that many an ausome child is very clean and organized. That is not the Cat. I can't be the only parent whose child can't break down tasks enough to be able to clean a room. Please tell me I am not alone. I can't be alone. Someone come join me in the swallor that is a child's messy room. Don't leave me alone here. It might eat me.

Once the room was clean, the Cat had to sleep in my room. That was so much fun... I got soo much sleep those 4 nights that I don't think I could handle repeating it. (If you can't read the sarcasm there you are on the wrong blog)

Then it was time to spakle the holes and begin painting. Wanna know how to frustrate a child in 1 easy step. Tell them they can't help paint the room. Trust me this was the best choice. If the Cat had been allowed to paint everything in the house would now be purple.

Before the actual painting of the walls though came the ceiling! That was the best part of it. Coming in a close second was the moving of the furniture out of the room, and in third taping everything off. I tell you what, I just cannot wait to paint another room.

But once that was all done the painting began.

storing things in the closet while painting

 All ready to paint

 told you it was purple

oh so purple

After the painting was done, we had to put everything back. It took about a week total to do from start to finish.  Still waiting on the padded floor mat to come in, and we have added a poster and a buttload of glow-in-the-dark stars. But it is done. And totally worth all the muscle aches. 

Just after the room was finished a good friend Dr. F and his wife gave the Cat a fish tank. Can guess what kind of fish she wanted in it?? If you said purple you win the prize... An ausomly autistic child of your very own.

Can't really see in this picture, but we did actually find purple fish. (Multi-fruit tetras for those who are interested.)

The Cat is in heaven! 

Teaching Some Lessons Part 2

Ok guys I am back. Sorry for the long hiatus. I know this post has been eagerly anticipated. We've had a lot going on in the world outside of my computer. The Cat is currently recovering from her surgery. She is doing well, but who would have thought the biggest battle would be getting the pain meds in her. That's another story though.

We left off with how to organize all of your documentation and what you should have. I said I would pick this one up with making a plan for your meeting. This is very important. You want to be the one leading these meetings. Not a by-stander with no useful input. This is your child. You know your kid better than anyone else. You have lived with this child for however long. Do not ever EVER ever let the school or anyone else try to tell you they know what is best for your child. In order to lead the meeting you have to know what you want to discuss, and you must have the documentation.

So again I will wait while you all go grab your pens to take notes. We all know that everything I am about to say is of dire importance. Some importance. Ok probably review for most of you, but important to some newbies out there, or even vets that are going in to battle for the first time. Go on now. Don't forget I said there was a quiz at the end.

Got your pens? Waiting with baited breath to read the next words of utter wisdom spewing forth from my fingertips? ;-)

In order to make a plan you must first know what you want.

Do you want accomodations? Which ones? Why? How will they help? Are they reasonable? Are you willing to compromise on any of them? Do you want an evaluation? Re-evaluation? Based on what?

HUH?? WTH are you talking about?!? How the fuck am I supposed to know any of this? I am not expert. The schools are the experts. Right?!? WRONG!! So so wrong. You are the expert in your child. You know what works, what helps, what hurts, what is not gonna fly in a million years. Trust your gut. You know this. And if you don't because like me you were thrown in to the deep end of the pool and expected to swim, then ask. Ask your friends, ask your child's therapists, ask doctors, do some research. Don't be afraid to reach out to organizations like the Disability Law Center or Alaska Youth and Family Network. These places have great resources and can help you figure out what it is you want to accomplish with this meeting.

Once you know what you want you have to figure out what the school is going want.It really does help to be able to see both sides of an issue. If you know where the school is coming from, then you can frame your argument around that. Make them see how doing this will benefit them.

For instance, I knew that Bird Lake was keeping the Cat out of her class because there were parent complaints about her meltdowns in the class. They were concerned with the amount of time the Cat was disturbing the education of the other students. I wanted the Cat in a self contained classroom, because I knew there was too much sensory stuff going on in the general ed class. I used the knowledge to get what I wanted. I pointed out that if we moved the Cat to the SPED class that she would no longer disturb the other children. I showed them that her education was not the only one being affected, but that the entire class was being disrupted. I won!

Next you have to figure out what you are willing to compromise on. You cannot reasonably expect the school to give you everything you want. They have budgetary restrictions, and other such nonsense to be concerned with. So, be willing to move a little on somethings.

The Cat needed a BHA to be successful in the mainstream class.The intent was to allow the teacher to keep teaching while the BHA helped the Cat calm down after a meltdown, help identify triggers, and many other wonderful things. I miss her so much... (not my point) But the school could not afford to provide a 1:1 aide. So I did. I found AK Child and Family and they provided the BHA. I wanted it, the school couldn't afford it. I gave a little and I provided it.

Bird Lake had a no gum policy in the school. The Cat likes to chew gum after a meltdown, or when escalating because it helps her get some needed sensory input. I provided documentation to this effect ( a letter from her OT). The school did not want gum. I found something else that would provide the same input (jerky). Compromise be willing to give a little. It will go a long way. Trust me.

Once you know these things you can set the agenda for the meeting. Make sure you send this out to the school about 3 days before your meeting so that they can be prepared as well.

I think that's everything. If you need more info just ask. I will cover other topics as requested.

QUIZ TIME:

If you made it this far then you pass and get an A when you smack down the staff at your next IEP meeting.

GO ROCK IT OUT!!

Teaching Some Lessons pt. 1

OK so I love the NBC show Parenthood. It is so honest about life. And I was watching this weeks episode (seriously go check it out but have tissues handy), when I was struck by the reality of how they displayed the IEP meeting....

SPOILER ALERT....

When the school staff was telling the mom and Kristina that they could not mainstream her daughter because she did not do well there last year and that aides were too distracting in a high school setting I wanted to SCREAM. And then when the staff acted like they were doing a huge favor by adding one more check-in with the teacher, and the mom and Kristina were like Uhhh... Hmmmm.... Ummmm... OK? I wanted to yell at them not to give up. And even more so when Adam and Kristina were meeting with Max's History teacher and the principal. The principal just shut down their complaints and said this is how it will be. UGH!!! I hated him for them in that moment.

SPOILERS OVER....

Also after my last blog post talking about all the lessons I learned from Bird Lake I got questions. Questions about how to keep all the records. What papers to keep, how to organize it all, how do you know what you want? How much is too much to give? How do you write the e-mail requesting a meeting? How do you write a follow up e-mail? How do you get the school or the district to work with you?

So to me this shows a need for some instruction. We are going to break this into a series of posts because I want to be able to provide some depth on each subject and I don't want to overwhelm anyone. Now, get your pens and paper there will be a quiz at the end. Seriously go get them you are going to want to take notes, I will wait. :-)

Are we all back now?

Good.

The first thing everyone with a child who has an IEP, wants an IEP, needs to know if they need an IEP, needs to do is go check out Wrightslaw. Seriously! Go bookmark that page in your browser now. It will become your greatest resource. You will keep going back to it over and over again. This is where you find out about the rights you have as a parent. It's also a great resource for all of y'all with 504 plans too. (Don't think I forgot about y'all.) Wright's Law will answer so many of the questions I have been asked, and would have made that IEP go better for everyone. If you don't like reading long articles on the computer, or prefer to read a book Wright's Law has several out that are helpful. I recommend getting them. They will help and you can take them to the meetings with you.

This tops the list because if you don't know your rights then the school/district can just yank you around and you won't even know. Seriously, they will. The schools spend so much time just assuming and hoping that you don't know your rights. If you want to beat them, then educate yourself on your rights.

Here's the deal though guys, there are so many aspects of Special Education that are not covered by federal law. So you also have to check your state's laws on Special Education. Generally you can find a handbook or something through your state's DoE (Department of Ed).

After checking out federal and state law to see how they apply to your situation find out whatever you can on your district's policies about the problem. Anything not covered by federal or state law is open to the district to manage. So make sure you read the copy of the policies and procedures that you are given at the team meeting. It has a lot of information hidden in it. Again they are hoping that you won't actually read it. So read it and be informed.

Next you have to get organized. If you are like me then you have no idea where to start and are completely overwhelmed with all the papers the school is sending home. You know you should keep them (they look important), but where? How?? Which ones??

I got a big water proof plastic box, and a large three ring binder. I put dividers in the binder. I broke the sections down like this:

• Communications - This was any written communication I have with the school. I keep it all. Even if it is just an email saying that the Cat was going to be out sick I keep it. I keep all the read responses I got too (more on those later).
• Daily reports - This is where I put all the daily reports I get about how the Cat's day was at school, disciplinary action reports, notes home about needing hat and gloves tomorrow. It all goes in here.
• IEP/504 - This is where the current and previous IEP/504 goes. I take it to every meeting I have because you never know when you will want to reference it. If you have a BIP or an FBA put it here. 
• Evaluations - The current and previous evaluations from the school go here, the current and previous private evaluations go here as well. I try to keep everyone on the same page so that the school and private therapists and I are all truly a team working to help the Cat so I have those evaluations with me to reference.
• Policies and Procedures -Remember how I said that the schools hope you don't read it? Well show them they are wrong. Read it, mark it up, take it with you to the meetings.

This binder will go to every meeting that you have. Become friends with it. Give it a name. Most important KEEP IT CURRENT!! This binder will be your documentation should you ever have to get a lawyer or an advocate. If you ever have to go over the head of the staff at your school, this binder will be your evidence. My binder helped me prove to the district how hard I had tried to make the situation at Bird Lake work for us. It helped me get the Cat out of there and into Owl Park.  My binder was my evidence when I went to the DLC about the improper use of seclusion and restraint on the Cat at Bird Lake. My binder is helping to make reforms in those policies at the state level. It will be your best friend, so get comfortable with it.

That's enough for now. I am sure your brains are full. Next topic will be about having a plan. Go get your binder and get organized.

Lessons Learned

So I love the Cat's school. I cannot tell you how much I love Owl Park. I have gone on and on and on about how wonderful this school is. How much they get it, how well it fits for her, how wonderful the staff is. Its just an amazing place.

I should just sit back, relax, and trust that they know best. Right?!?

CONFESSION TIME: I do not trust the schools. Not a one of them in this district. I do not trust the district here. I have been burned. I take nothing they say at face value. I research everything, I educate myself, I know my rights, I question, I document, and I keep records.

Before the winter break the Cat's teacher Miss Patient mentioned to me that the Cat is academically above the other students in her class. She gets frustrated when she see them taking more breaks then she gets, or when she finishes and has to wait for them. Miss Patient came up with a wonderful solution. The Cat can do her academics with the resource group. She will go there in the afternoon, and be able to spend the rest of the day with her SPED class.

Wait WHAT?!? You want to change her schedule and make her stand out again?? The Cat finally feels like she fits in. She is finally making progress both academically and behaviorally. She is happy, she is doing GREAT here. Why would you want to change that?? I fought so hard to get her here. To get her to this place where she is succeeding. Why would you want to take that away from her? Am I going to have a whole new fight on my hands to keep her here? I was terrified. All the old fears came rushing back to the surface. The Cat is finally doing so well, why would you change any of that? Why not just let her be?

This school has done nothing to make me doubt them. I honestly believe they want to help the Cat. I am comfortable with her being there. I trust that they want what is best for her. So why am I so anxious? Because I was burned. I was burned bad by the staff at Bird Lake.

I learned some important lessons from that. I learned to keep both hard records and electronic copies of everything. I do mean everything from the school. I kept every e-mail, every note sent home, every phone call was noted. Every evaluation was filed away, all report cards were put in my war chest. I learned to send follow up e-mails to phone calls and face-to-face meetings. I never went into a meeting alone. I set up read responses for e-mails sent. I always had a plan for each meeting. I new what I would give on, and what my bottom line was. I learned when to fight harder, and when to back down. I learned how to go around, over, or between staff to get what we needed.

Now it is time to learn a new lesson. How to let go. If I truly love this new place I have to let go of the old one. I have to trust Owl Park and let them educate my Cat. I have to believe that they are not Bird Lake. Like leaving behind the scars of an abusive relationship to find new love, I have to let it go. I cannot keep waiting for the past to repeat itself. I have to remember that at this wonderful new school I am an equal member of the team. It is not me against them. It is us working together. Owl Park is not Bird Lake. They GET IT, remember?!?

So with a deep breath, and great trepidation I said ok. The Cat started her resource group two weeks ago. And you know what?!? She is LOVING it. All those fears were unnecessary. The Cat is making friends. She loves going to resource, she loves going to "specials" with a mainstream class. The Cat is still in her SPED room and getting her speech. She is still getting her OT eval. And best of all, her report card was INCREDIBLE!! There was not a single N, for the first time in three years. SO...

CONFESSION TIME: I was wrong...  (mark that on your calendars)

Why Can't We Be Friends

Remember how just yesterday I was talking about how I was going to embrace the Cat's sensory differences? How I had finally managed to convince myself that fighting them was a losing battle?

Well it would seem that some people want to know why. Don't I want my child to fit in? To be lime the normal kids in school? (I cannot tell you how much I hate that word as a description.) How will she ever be successful in life with all of her problems? The real world won't make accommodations for her forever. She will have to get a job at some point. Isn't it best to teach her how to fit in now? Why do you want to make things so hard on her? Don't give up! You can cure her.

You know what I have to say to that? :-p Go find a hole to crawl into. Feel free to live your life the way you want, but don't you dare judge me.

I never said I was giving up. I said I was trying something new. I was listening to my gut. I have the Cat on a waiting lost for Sensory Integration Therapy with an OT. I know that there are certain things that the Cat will have to learn to cope with. Some things in the world will not go away and she is going to have to learn to live in a world dominated by NTs.

What I was saying was that I don't know how to help her learn those coping skills. I don't process the world in the same way that the Cat does. Oh, how I wish I did, even for just a day. It would make life at home so much easer. But, alas, I don't. So, even though I know my daughter, I don't know how to help her cope.

I know what sets her off. I know what she struggles with. I know what the Cat likes. I know what she doesn't lime. But how do I help her learn to cope? I don't know. So I am trying to get her (and me) help. Someone who is trained to help her manage all of her sensory challenges. In the mean time, rather than fighting every day, over things that really aren't important in the grand scheme of things, I chose to make some minor accommodations.

I mean come on people, does it really matter if she wears jeans or leggings? At least she is wearing pants. Considering it has been a strange winter here and we have lots of snow and cold, I will take that small victory. Does it matter if the Cat wants to sleep in a cave? If it helps her sleep, so I can sleep then, again I claim victory.

But here is the kicker. Here is what really matters in all of this. Stop trying to tell me that there is something "wrong" with my child! That she has a disease that needs to be cured. Autism is not a disease. Asperger's Syndrome is not a disease. It is simply a different outlook on life.

It is not an easy road to walk. There are days that flat out suck. There are days when I want to crawl into bed and wait for the storm to end. It breaks my heart when I watch the Cat struggle with seemingly simple tasks. It sucks when she is struggling to communicate something, and can't find the words.

But then there are the days when she finally grasps a new skill. Days when she smiles and her whole face lights up. We as parents cherish the small things so much more. We know how much effort is behind that little smirk we just saw. How hard Johnny worked to be able to tie his shoes. The day the Cat let me brush and curl her hair. Those little things are huge to us! We live for those moments.

The Cat has an amazing talent for designing clothes, seeing patterns, holding street layouts on her head. She can make connections to things that I would never see in a million years. Why would I want to change that? Why would I look at these skills and think she needs to be cured?

I love my child. I want her to be happy. That is why I am seeking out help for her. Not in an effort to change or cure her. I want to help her to cope, so she can be happy. So the rest of the world can see in her what I see. And until then, I am going to choose my battles. I am going to let her have caves, let her jump till she can't anymore. Let her wear leggings instead of jeans.

NT parents choose their battles all the time. It's common parenting advice. So why do we spectrum parents get chastised when we do it? Why can't we just get along?

That is my request of you, think before you start to judge someone. Often they have reasons for what they are doing. Ask yourself if you are judging them for something that you feel entitled to do. Ask if you truly understand what it is like to live that life. Remember that we are all parents and in the end all we can do is make the best choice we can. Use the tools we have in our toolbox, and make the best decision we can with the given information. Odds are we all feel like we a screwing up anyhow. And if you meet someone who has no doubts, who is not worried about scarring a child, RUN!!! As fast as you can, in the opposite direction, RUN!!!

New Plan for the New Year?

Some of you may be aware of the Cat's increasing sensory challenges. Sensory problems are an on going joy of us autism parents. Trying to find just the right balance, can't have too much stimulation, but can't have too little either. What sensory release do they need? Do they need more input? Or less? Do they need to jump? Have pressure? Hide in a cave? Roll up in blankets like a taco? Swing? Roll on a ball? Bounce?

So how do you know how much is enough? There has to be a way to tell right? We parents should just instinctively know, shouldn't we? Aren't we failing them if we don't just know what it is they need? We are the parents it's our job to just understand  their needs and meet those needs.

Yeah, NO. Sometimes we have to learn the hard way just like everyone else. Often with sensory difficulties the solution requires lots of trial and error. What worked yesterday may not work tomorrow, but might work again in two weeks. You have to have s bag full of tricks.

Where does that come from? Again, we just magically know, right? It comes in that manual all parents are given when they get the diagnosis. You kept it right? You didn't get one? Well you know your child right? You know what they need. Just like as a parent of an infant, you can tell the difference in their cries. You can't?

Yeah, NO! Doesn't happen that way. For most parents this is all new. Sensory processing disorder?? WTFFF is that? WTHFF do we do now?

The first step is often a trip to the OT office for evaluation. If you are lucky, you will have an OT that will do sensory integration therapy. If not keep looking. This will be very important. The OT can help you develop a sensory diet for your child. This will be invaluable. Trust me.

I have been waiting to get the Cat in with an OT here that does sensory integration. We in Alaska have limited resources. In the meantime the Cat keeps developing more and more sensory issues. So for the new year I have decided to try something new.

Stop fighting them, embrace them. I know, I know it is such a novel concept. How did I ever come up with this idea all on my own? I should confess, this has been my stance all along. But I have finally managed to convince myself that this is the best way to go. Stop fighting the losing battles. Stop trying to make her fit into the NT world.

The Cat hates wearing jeans, so stop buying them for her. Buy other pants, yoga, sweats, leggings. All acceptable, and sensory friendly. The Cat loves fleece, anything fuzzy really. So buy lots of soft, fuzzy items for her to nest with. She loves caves, doesn't really like her bed. So move the bed out, buy a tent, an enclosed air mattress, and let her have a cave. We already put a therapy swing in her room, so that is one check off the list. The Cat loves to jump. She gets so excited she will hold on to my hands and jump until my arms get tired. So let her jump. Buy an indoor trampoline and let her jump all she wants. The floor however is hard, tile on top of cement hard. And the Cat nares the rug we have in her room. So buy some foam floor mats and put those in. Kill two birds with one stone, safety and comfort.

This is what we are looking at to redesign her room and hopefully meet some of those sensory needs. It will happen slowly. Right now we are working on cleaning her room and moving some furniture out, so there is room for all the changes we are going to make. I will post before and after pics on Facebook when we are all done. And I will be sure to keep you all posted as to how her new sensory room works out.