March 29, 2013

Some Things Take A Little More Time

The last time I took Moe with me to pick Jelly up from school, he had a major meltdown--the worst one ever. He pulled another child's hair, and I had to drag him, screaming and scratching, out to the car. The teachers were wonderful and helpful, but I was both broken and mortified after this incident. And so, so sad.

That was last summer, and I haven't taken Moe back to Jelly's school since. This incident was one of the primary reasons I have help in the afternoons. Our nanny picks Jelly up from school, or stays with Moe so I can get her.

But last week, our nanny was sick and Jeff couldn't get Jelly, so I took Moe. I didn't have a choice.

When Moe was a newborn, I, like all new mothers, had no idea how I was going to go about my day with this little baby. How would I go grocery shopping? What if he had to eat or be changed when I was out? I resolved that I would not be scared of my child. It sounded funny, but that is what I had to tell myself to get out of the house. I will not be scared. And that is how I did it. We tried new things. We went to the store and playdates and music classes and it was all okay.

But as I drove with Moe to Jelly's school last week, I was scared. I tried to tell myself not to waste any emotional energy on fear of what might happen. I told myself that Moe is a much different kid than he was last summer. Everything would be fine.

We got to school, and Jelly, of course, wanted to show me a million things. And Moe loves Jelly's school. He wanted to run around and see everything and generally wreak havoc. But he can't be trusted there, and so I have to hold his hand. He started to fuss and complain.

This is exactly how it started last time. Moe got mad that I was keeping him from playing and started to melt down. He was frustrated, but there wasn't anything I could do about it. This time, I knew enough to get out of there quickly. Jelly understood that she had to come with me, and we avoided a major incident. But it was close.

Moe has come a long way. He is learning to behave and communicate without aggression much of the time. But this is one situation that he is still not ready for.

March 20, 2013


I turned 40 earlier this month. To celebrate, I spent last weekend in San Francisco with friends. I knew we would have fun. I knew we would eat and drink and relax. But what I didn't know was how overwhelmed I would feel.

I am often overwhelmed--with, with stress, anxiety, with too much to do and too many decisions. But this wasn't like that.

I was overwhelmed with gratitude for a husband who gave me a weekend off, just because he wants me to be happy.

Overwhelmed with love from friends - ten! - who spent all or some of the weekend with me.

Overwhelmed with generosity of friends who not only spent their time and money on a vacation, but on beautiful flowers and gifts.

Overwhelmed with delicious food and beautiful weather.

And then, when the weekend was coming to an end, overwhelmed with bittersweet sadness at saying goodbye to two friends who moved far away. The time with them meant everything and life is such that it is hard to visit. But I will try. New Beth, Beth Classic and Beth 2.0, to Karyn, Cynthia, Lyn, Danielle, Jill, Phoebe and Francesca, thank you. Thank you for the weekend, and for so much more.

March 14, 2013

Sick Days

Moe doesn't get sick very often (knock wood), and now that he isn't in school he is exposed to even fewer viruses. But last weekend, he caught something. It didn't seem serious. He had a low grade fever that I treated with one dose of ibuprofen then never returned. He didn't want to eat much, but was drinking water and wasn't dehydrated. He was tired and mellow, content just to hang out on the couch or in his room.

Come read more about what it's like when Moe isn't feeling like himself over at Hopeful Parents, where I write on the 14th of every month.

March 11, 2013

Knowing Me, Knowing You

How many times have I said "if only I could get inside Moe's brain for a day?" When my online book group, From Left To Write, announced we were reading "Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors and High Explosives," I jumped at the chance to read a book written by an adult with autism. (I have also read John Elder Robison's first memoir, Look Me in the Eye.)

I have very little insight into how Moe thinks and feels. His processing of the world must be so different from mine. I imagine it is based much more on sensation and impulse, that he thinks, as Temple Grandin puts it, "in pictures" rather than words. How does the world sound to him? Look? When he covers his ears when the wind blows, is it because the sound hurts him? Or does he like the way it sounds when he covers his ears, just like he seems to enjoy laying on his back in the bath with his ears just below the water? I can only guess.

I know how Moe behaves in certain situations. I have a general sense of how Moe communicates his needs, what his various sounds and gestures mean. We make it through each day, somehow piecing together each other's demands. Clumsy as it is, it usually works. But sometimes there are things I can't puzzle out. Is he frustrated? Not feeling well? Hungry or thirsty or cold? Sometimes, he may himself not know; he is only five and still developing emotionally. But sometimes, I know he's trying to tell me what he needs, and I can't figure it out.

Reading the words of autistic adults can help. In many ways, they are perfectly suited to explain how it feels to have different sensory processing needs, why eye contact can be so challenging, or how to calm a restless body and mind. I do my best to listen. As Moe grows older, I hope that we will find some autistic adults who can help him understand his body and mind in a way I cannot.

But the thing that struck me most about this book, is how little the fact that John Robison had Asperger's seemed to help him raise his son, who was also later diagnosed with the same disorder. Although Robison suggests that some of this lack of insight may have been because he has Asperger's himself, that isn't the whole picture. The fact is that Cubby (the nickname Robison gives his son) is very different from his father. Cubby is outgoing and smart, but disorganized and has difficulty with executive functioning skills. He has some obsessive compulsive behaviors, like hand washing and hair brushing. John, on the other hand, struggles more with social behaviors. Both father and son have Asperger's, but it doesn't necessarily bring them much closer to understanding each other.

Sometimes we neurotypical (i.e. not autistic) parents of autistic kids are made to feel that we cannot possibly understand our autistic children. That the therapeutic approach many of us take to helping them succeed is inappropriate. That ABA methodologies are nothing short of abusive. These words sting--how could they not? We are told that others know better what our kids need.

I don't believe it.

Moe's autism is uniquely his. And while some of his experiences may very closely resemble the experiences of some other autistic people, others experiences may more closely resemble my own. He loves to have his feet rubbed, for example. So do I. Some people hate to have their feet touched. This probably has absolutely nothing to do with autism, but there is no way to know where the line begins. Moe's primary area of need is with language and communication. I can look at other people with autism and see how they have learned to communication, but those methods won't necessarily work for Moe.

In the end, we each have a unique perspective on the world. There are a billion factors involved, and who says who might understand Moe best? All I know is it is my job to try, and one I do with love and the best of intentions every single day.

This post was inspired by Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives by John Elder Robison. Parenting is a challenging job, but what challenges does a parent with Asperger's face? Join From Left to Write on March 12 as we discuss Raising Cubby. As a member, I received a copy of the book for review purposes.

March 4, 2013

Measurable Progress

Someday I will share the full story of how and why we pulled Moe from school. For now, it is enough to know that he was not progressing there. What started as a desire to secure additional extended school year services (for summer and other breaks) turned into a full independent evaluation done by a very well respected child psychologist on our dime. She observed Moe in class on two separate occasions, and it was her professional opinion that the school district's preschool program was not appropriate.

Moe has been doing an in-home ABA program since June. He receives about 20 hours a week of in-home behavior therapy as well as an hour a week of speech. In the beginning, the difference was remarkable. While the school tried to convince us that Moe wasn't meeting goals because of his "rate of learning," Moe mastered his programs at home quickly. The school and our ABA provider use the same program so the comparison was easy.

Jeff and I have been thinking a lot about where we want Moe to be next year. Should we continue with a home program? Get him back into school? And if school, which one? We know the district's program is simply not appropriate for Moe, and there are several non public schools in the area. Last year, I visited seven of them, and there are two or three that might be appropriate, though they all have serious trade-offs. We will need legal action to get Moe in one, and we need to be sure the one we choose is the right fit.

I've also been questioning a little whether his home program continues to be effective. Moe is bored at home sometimes. The program is highly scaffolded, meaning that program progresses in small, incremental steps. While his early progress was remarkable, it can be hard for me to see the progress when the steps are so close together. For example, to Moe one sorting task probably looks a lot like another, even though we've added more items or distractors to make the task more challenging.

In order to help us answer these questions, I took Moe to see the same psychologist who evaluated Moe last year. Dr B met us in the waiting room, looked at Moe, who waved to her. She said "such a difference from last year. I can see it already."

I was nervous as we went to her office. Moe can be aggressive and non-compliant and frustrates easily. I really wanted her to see him at his best. This assessment isn't about qualifying for services, it is about making the best decision for Moe. I wanted her to get an accurate picture of Moe's skills.

He did great. By that I mean, he did his best, with no behaviors to get in the way. He showed what he could do and where he still struggled. He sorted. He matched. He imitated and approximated words and blew bubbles. He had trouble with a few areas I know he knows (like pointing to body parts), but Dr B will be here Thursday to see him in a ABA session as well.

This was the first assessment I can remember leaving with a smile on my face. I did not fall apart in the car on the way home. Moe has made progress.

Moe is still severely delayed. He's probably at a 2 year old level or younger for many things. But he's doing better. He's learning. As we were packing up to leave, Dr B said to me  "It is nice to see him learning things and not just pushing toys around in shaving cream."

And in that moment, I knew that we made the right decision to pull Moe from school. I know his progress this year has been real and significant. I still don't know what we are going to do next year. But I do know we were not being unreasonable to demand better for him, that his lack of progress wasn't because of his learning, but because of how he was being taught.


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