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.