A Safe Place


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.


Today and Every Day


The kids and I had a talk at breakfast this morning.

I told them that today was the day that Donald Trump was becoming President.

They are still disappointed, as am I.

We are all nervous for four years of a person who we believe doesn’t treat people the way we believe they should be treated. They all added up how old they will be in four years when hopefully we get to fix this. It seems like a long time off.

We talked about how even though he is the President, we will not ever follow his example of how to treat people - we will always fight for equality and fair treatment for everyone.

Today is also the day of their assembly at school celebrating Dr. Martin Luther King Jr., and I think the timing of this couldn’t be more perfect.

So we talked about the importance of the work that Dr. King and so many others did, and how it is still so very important. And maybe now more important than ever. 

We talked about how fighting for equality is not just for black people, but for everyone - no matter what you look like, what you wear, what your abilities are, what you believe. 

We talked about how it is their responsibility to keep doing the work that Dr. King and so many others did, and still do, every single day. 

We talked about how it is their responsibility to speak up and speak out if they ever see someone being treated in a way that they believe is not right. 

We talked about how if they see someone being treated unfairly or being bullied it is their responsibility to go to that person, to stand for them or stand with them, to never just look away.  

We talked about how they should walk up to that person and say, "I am here for you. I will stand with you. I will protect you."

We talked about how those are the times that it is ok to question the rules or what seems normal - about how it is their responsibility to do what they believe is RIGHT, to not just follow a rule that they believe treats people unfairly.

We talked about how we will always do what we believe is the right thing to do, regardless of what the rules say. 


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".


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.