A Safe Place

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Yesterday was a two meltdown day for Danny, and I heard that he also had a bit of a rough time at school.

We leave on vacation tomorrow. He is VERY excited about that. Excitement and hyper focus on an upcoming event means he doesn't sleep as well. A planned vacation and missing school also means a change in his routine. Even though it's a good change, it's still change, that needs to be internalized and adapted to.

All of this - excitement, lack of sleep, change... throws off his very delicate balance that we work very hard to maintain.

When his balance is off, everything is harder.

Disappointment is harder to cope with, it's harder to focus, it's harder to get work done, behavior is harder to control, impulses are harder to control, making decisions is harder, answering questions is harder, following directions is harder, initiating tasks is harder, transitions are harder, communication is harder, sensory input is harder ... everything is harder.

And when all of that is harder, and he's not managing his behavior well, and not following instructions well, and not handling disappointment well, and not communicating well, and all of those things... People get frustrated and upset with him, they lose their patience, they raise their voices, they rush him, they push, they threaten consequences, they take things away, they choose this time to dig in and make a point about enforcing the rules and expectations. And when all of that is happening, he gets even more off balance, and then everything gets even harder still.

And you can see where I'm going with this cycle.

He gets to a point where he actually can't cope. This is when the meltdown happens. Sobbing, yelling, screaming, trying to hit anyone and anything around him.

Nobody understands this.

They call it a tantrum. They call it bad behavior. They call it just trying to get attention. They call it trying to get his way. They think I'm letting him get away with behaving badly and treating people poorly. They think that I am rewarding bad behavior when I "give in to it".

But it's none of that. It is his brain and his body on total overload, completely out of his control, and completely overwhelmed. It is the totally overwhelmed system reacting to what feels like danger, to what feels like a threat. It is fight or flight. It is his brain fighting for survival when it feels like the world is crashing in.

It's not just an excuse to blame it on autism. This is autism. This is what it looks like. This is what it feels like. 

And when he gets to this point, he only wants me. He rejects everyone and everything else. He needs me to get him the things that calm him down - his lovies, his music, his few special toys. He needs me to hold him, me to comfort him, me to give him the squeezes and pressure that his body needs to calm down. He needs me to reassure him that he is ok, that everything is ok, that nobody is going to take me from him, that nobody is going to be mad at him, that nobody is going to take his comfort things away.

It's not coddling, it's not giving in to the behavior, it's not letting him get away with anything. It is helping him. It is doing for him what he needs in order to survive. It is doing my job.

I am his safe place.

I am the one person that he trusts when he is completely lost in this world. I can get him to calm down and come back to us. I can wrap myself around him and let him feel protected from everything that is overwhelming him. When he feels protected by me, and he starts to feel safe, he can start to relax. His fight or flight response can start to back down. He can start to come back.

He went to sleep last night sobbing, with me wrapped around him, his body fighting until it had no energy left. And then I went to bed, with nothing left.

It's a privilege, to be so trusted and so valued.

It is an honor to be welcomed into his world, for someone to have so much faith in you. But it also brings fear. I am afraid for him, for how he will be if and when this happens and I am not there to help him, to protect him for all of the misunderstanding.

It is also exhausting, and stressful, and sometimes overwhelming.

 

Why Inclusive Education? And why it matters now more than ever.

I never wanted to be a special education advocate. It's really something I had never even considered in my life. I said something about this to one of my child's therapists the other day, that I was apparently becoming a special needs advocate, and she said "Lisa, you became a special needs advocate the day he was born".

anothernormalday.com

These last few years have been an education. A crash course. I've learned more by having this child than I learned in all of college, and perhaps even more than in all of my other life experience since then. I have become somewhat of an expert on special education, because I have to be.

I'm emotional and scared and fired up about the cabinet nominee confirmation hearings. I am afraid of what is going to happen to my children's future if some of the things these people are promising come true. I am speaking up and speaking out more and more because I think it's well past time. Too many of us have been too quiet for too long. And now here we are. 

So I guess I'm a special needs advocate. 

In response to a post on my Facebook page the other day, about the Secretary of Education nominee and her seemingly non-existent knowledge of special education law, I got a comment with what I think are probably some common beliefs and misconceptions. I replied to it there, but I felt like the reply I wrote deserved to not be buried in a comment to a comment.

We need to keep this dialogue open. Those of us in the trenches of this need to keep answering questions openly, keep educating those around us. It's our duty to our children, and their children, to foster as much understanding about this as possible. 

The relevant part of the comment:

... here's what I have never understood; whose best interests are really being served by mainstreaming special needs kids into the general public school situation? The child is absolutely not receiving fully integrated education for their specific needs or by specifically trained educators. They're being offered sporadic resources and a full school day in the hands of a teacher who is credentialed for standard academics. He or she cannot possibly offer the special needs kid all that they need and deserve as they do not have the training and or the time. There are typically 25 or more other kids in the class that deserve attention and education as well. In my opinion, it is impossible to do both . Either the special needs kiddo will suffer ir the mainstream kids are going to lose out. It is asking far too much of the teachers and creating a situation where at least some of the students will suffer as a result-including the special needs child. Fed funding should be utilized to provide an environment strictly for those kids so that they can be offered all of what they need and deserve from educators trained specifically for that purpose. This was the way it was when my girls were little. I truly don't understand the reasoning or benefit to the current policy. Can you enlighten me?

(I will pause here for a moment and note that I am not a trained educator, or administrator, or a lawyer, or a researcher, or anything super important like that. I'm a former big software advertising manager with an economics degree who now stays home with four kids, spends her spare time combing over IEPs with a highlighter and red sharpie, drives a minivan full of Cheez-Its between school and dance and therapy appointments, and does 6,000 loads of laundry a day, all while begging people to please just eat their goddam breakfast so we aren't late for school... again. My opinions below are just that - my opinions. I believe they are relatively well informed opinions, but they are still just my very own opinions.)

My response to these comments and questions (edited a bit for clarity and emphasis, and expanded on a few points a bit, because I'm vain like that, and Facebook doesn't let you add emphasis to your text)...

All students best interests are being served. And all of a community and society's best interests.

First of all, because segregating children in schools teaches all of them from a very young age that there is a difference between "us" vs. "them", and that "us" and "them" should be kept separate. "They" should be in separate classrooms. "They" are taking attention away from the "normal" kids in class. It is the beginning of the slippery slope to systemic discrimination, teaching very young children that maintaining separation and boundaries between people who are different from you is and should be normal. We already have way too much of this kind of discrimination in this country, but I am hopeful that my children's generation can be the ones that change this, because they are learning every day that different is normal, and different is beautiful, and different is to be valued.

This matters now more than ever. We have so many divisions in this country. So many issues and groups and hateful people trying to drive us apart. It is critical, absolutely critical, that our children learn acceptance and understanding and the value of uniqueness - and that they learn that separating "them" - whatever kind of the "them" they might be - is not ok.

Beyond the hopefully obvious discrimination issue, there is so much more benefit.

To respond specifically to your point about the disabled child not receiving fully integrated education for their needs or by trained educators - that is absolutely not true. And that is the exact point of the IDEA law - to ensure that the disabled child receives the support they need in order to access the same education as everyone else. My child is absolutely not receiving sporadic support - a great deal of time is spent figuring out what parts of the day he needs direct skilled support, and he receives the support he needs when he needs. Again a key reason for the IDEA law - to ensure that this happens.

(I will interject here that, yes, I KNOW that the special education systems aren't working perfectly, that they are even badly broken in places. But I also know that a lot of really good people are doing their very best.)

Now, as for the bigger picture...

Disabled children and non disabled children actually learn better and get a better and more balanced education in an inclusive educational environment. I might even argue that in many cases the non disabled children benefit even more...

They learn compassion. They learn about different learning styles. They have the opportunity to see that all learners are not the same. They have opportunities to be mentors and partners. They have the opportunity to learn how to help and support members of their school community - which will in turn lead them to be better members of their communities as adults (traits which we desperately need in our country). When special organizational or behavioral supports are put in place in a classroom for a child with special needs, all children benefit from the added care and structure.

I hear often from parents of other kids in my son's class how about happy they are to have him in their child's class - that his presence is teaching them so much, and it opens up opportunities for conversations at home about his disability, and what it means, and how they can help him, and how much they love him.

Teachers BENEFIT from being required to have the skills to teach across a broad range of learning styles. They become better teachers. And having better teachers benefits all students.

School resources are used more efficiently - rather than having totally separate classrooms and separate full time staff, those resources are incorporated into all the classrooms for all students to benefit from.

My child benefits because he is getting access to the exact same education that every other child has access to, and he gets the additional help and support he needs in order to access that education - rather than being stuck in a special ed classroom where the curriculum is modified for the lowest common denominator.

Honestly I could go on, and on, and on about this.

....And I totally will if you pour me a glass of wine and start asking me questions. 

New year, new routines

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A new school year brings new routines. But with autism, change is hard, and sometimes scary, for both of us.

Third grade is supposed to be more independent, less hand holding. But whose hand shouldn't be held as much, his or mine?

Letting go is hard, especially when the last few years have required so much assistance, it's hard to know when it's OK to back off without negative consequences. He wants to do his morning school routine independently, but he also wants to know that I'm there if he needs me. My presence is grounding for him. And I'm not quite ready to completely step away and leave him to fend for himself. I need to know that he's off to a good start, otherwise I'll worry all day.

So our morning compromise that's feeling right for both of us right now: he lines up with his class and goes in on his own while I hang back. Once they are in, I head up and stand outside his door while he unpacks. When he's done putting his things away and settled at his desk he gives me a thumbs up, I wave and blow a kiss, and I go. My staying tells him that I've got his back and I'm there if he needs me, but my distance tells him that I know he can do it. His thumbs up tells me that he's happy and his needs are met, and I can leave without worry. We part with us both feeling confident that the day is off to a good start.

In his bubble.

It is often said that autistic people live in their own world - in a bubble. And Danny certainly does at times. Except he is never alone in his bubble, I am always with him.

His world includes me, and he can't conceive of a world without me involved in every detail. I am not just invited, I am expected, even demanded, to be fully present. It is a privilege and often an amazing experience, to be so deeply immersed in a world in which others are seldom invited, but it can also be exhausting. His world is very intense, very noisy, very busy, very demanding.

AnotherNormalDay.com

That was the original caption I included with this photo. But I wanted to tell more. 

I was explaining to a friend what life is like with him lately. It's so conflicting for me - it can be so amazing, but it is also so draining.

There is a concept in infant & child development that I read about back when my babies where babies. The idea is that they are born with no sense of themselves as an individual. They don't understand that they are distinct individuals, separate from other people, and in particular they don't understand that they are separate from their mother. Mother's voice is internalized because it's the voice that sounded like it was coming from inside of them. Mother's heartbeat is the sound they are used to hearing and the rhythm they are used to feeling. Mother's cadence of walking, mother's body temperature. All of these things are inextricably tied to their existence when they are born, because they are the rhythms of the only life they have every known. What's mother's is theirs, and what's theirs is mother's. They gradually learn to make the separation as they grow and experience the world around them. They gradually begin to realize that they and mother are two separate people, and they begin to define who they are as an individual. I don't know if there is a fixed developmental time when this happens, but from my observation it seems to be late infancy or early toddler when they have fully completed this separation of self. I think this is why people know of the "terrible twos" as being so hard - it's that stage of having finally reached independence. It's the stage of "me", "mine", and "I do it myself".  

But there are times when I think that Danny still hasn't fully made that separation. There are times in my day when I realize that his existence is still inextricably linked to mine, that he still very much defines himself by his connection to me. He matches his rhythms to my rhythms, his tone to my tone, his mood to my mood. He expects me to be completely attuned to his needs and completely instep with his train of thought. He gets irritated when I don't follow along with his every thought, when I don't immediately agree with his ideas. Actually, it's more than irritated - it's often rocked to his core. He can't seem to conceive of the idea that I might have different thoughts than he does. He doesn't want me to be happy when he is sad. He doesn't want me to be sad when he is happy. He doesn't want me to sleep when he is awake, or to be awake when he is asleep. 

He expects that we are the same. And anything other would burst his bubble. 

All of the pieces

It's human nature it seems to have a need for order. Some of us more than others I suppose (we don't all immediately sort everything by color), but we all want to put things in their place to some extent. We group similar things together, categorize them and then point out how they are different. Children are taught this from the time they can reach for a toy, it's considered a developmental skill that we take pride in. We like to label things, and we're taught that everything must have a name.

We want an explanation for that which we don't understand. We want to have a tidy little box to put uncomfortable things in. 

When something doesn't go they way we think it should, we want to know why, we want to know who is at fault. We need an explanation. 

We want it "fixed". 

anothernormalday.com

But not everything fits our idea of order. And not everything "out of order" is broken. 

The puzzle piece is a commonly used symbol to represent Autism. It made sense in some ways I guess, as a representation of what can seem like a complicated mystery to some. It was adopted as a symbol to represent autism at at time when it was thought that autistic people "suffered" from a condition that was very puzzling. 

But now that we know more about autism and autistic people, I've been thinking lately that this symbol isn't a very accurate representation. A puzzle is flat and one dimensional. A puzzle is missing pieces, and does not represent a whole picture. A puzzle is fractured, and fragile. A puzzle piece or collection of puzzle pieces represent something that needs to be put together. They are a thing that is not whole. 

There is an idea that autistic people must be cured, or fixed. That they are broken or somehow not whole. You read crazy things about how a particular diet, or oil, or therapy, can "cure" autism. People are hurt and angry because their child is "damaged", and they will search high and low to find a way to "fix" him. 

I think some people think that if you can just find the missing pieces, then you will be able to put the whole picture together and it will look exactly as you thought it should. That you can make perfect what you currently see as broken.

But it doesn't work that way.

Autism isn't a disease to be cured. It isn't an affliction. It isn't something broken to be fixed. And it isn't a puzzle to be solved. Autistic people don't need to be put back together. They don't have any pieces missing. The brain of an autistic person isn't broken just because it doesn't follow the order that we think it should. It's just different. They just need to be seen and heard and understood, without our need for our order applied to them.

I think they often struggle to get along because our sense of order in the world and our beliefs about how things "should" be doesn't fit them. We sometimes say that we wonder where our son is from, because he often seems like such a foreigner in our world that it seems like maybe he isn't actually from here. The reality for him is that he is just fine, but he has been put in a world that doesn't fit him. It's like he landed on a strange planet, where the language and the customs are all alien to him, and he struggles every day to understand how to live in this foreign land.

My son is none of those things that the puzzle piece represents.  

He is not a missing piece to a puzzle. He has no missing pieces. He is not flat and one-dimensional. He is not weak. He is not an imperfect picture. He is perfectly who he is. 

If I were to describe him with a similar but more accurate analogy than the puzzle, I would say that life with him is more like a Rubix Cube (remember those? or am I dating myself?).

Like the cube, he is multidimensional. And, like the cube, he has very clear lines and boundaries. He is colorful and complicated.

His way of doing things might seem out of order to us sometimes, but they make perfect sense to him. His brain just doesn't work the same as ours. That doesn't mean better or worse, it just means different. 

His pieces are all there, held tightly in place. Not a single one is missing. 

AnotherNormalDay.com

His pieces are not ordered in a way that seems 'correct' according to what our society has decided is normal. His pieces sometimes seem jumbled or out of order by our definition.

To look at this jumble of pieces you feel like you want to sort it out, like the Rubix Cube. Trying to help him fit into this world that wasn't built for the way his brain works, can feel like a challenging mind game. You can twist and turn and make little adjustments, and never get it quite sorted to the way you think it should be. You can work it carefully and get one side beautifully lined up, but then another side is jumbled. Then you hesitate to make changes because you don't want to jumble up the side that you just got sorted. Maybe you're lucky enough to occasionally get it all sorted for a time, and everything seems great and life is going along well. But all you have to do is make one small change and the whole thing is jumbled again. Give it to someone unfamiliar with how it works, and it's a mess.

You have to be so careful of every move you make. 

Life with him is never boring. I learn a technique or a new insider trick to the game every day. Sometimes showing him how life in our world works can be really fun. Sometimes it can make you feel like your brain is gong to explode. When you get something right you want to cheer for yourself. When you make a wrong turn you know you're going to be starting the whole thing over again. 

A challenge? yes. 

But a one-dimensional puzzle that is missing a piece?

Never.