Who's learning more, Bug or Mama?

So Nana and Papa visited last week, which is why I'm behind on the blog. So let's see what's new:

Speech:
Well guess who knows his colors?! All the sudden it must have clicked for him because suddenly he's telling us that things are red and blue and yellow and on and on. He still has some confusion: purple is pink (pink is pink too) and adorably, he calls black "night". Seriously, so cute.

He has also had us read to him again, not spontaneously, but after we've read a book he sometimes requests it again. Yesterday he had me read "The Foot Book" 3 or 4 times in a row. :)

Along the same lines, he's been having Adam and I take turns reciting "Green Eggs and Ham" to him. Typically I do the "Sam" lines and Adam does the heavy lifting ;) He uses word prompts (Mommy or Daddy) and sometimes looks at us when it's our turn. He also enjoys having us say our parts in specific voices. I can't remember if I've talked about this before, but sometimes he'll have us say things in a high voice or start high then finish low, or a serious voice. It's hysterical, I really need to try to get video of it.

We've also been trying to get him to use longer phrases, with concrete verbs (like "I want to eat pretzels" etc). He still needs a lot of prompting, but he can do it!

He did a really good job requesting Papa to come with him, that was cool to hear, that he wanted to interact with someone other than Mommy or Daddy.

OT:
Last week Adam sat in on Bug's session. Apparently he was a little more resistant than he had been, but we're hoping he was just tired from our visit to the ocean the day before. Bug's been working on doing small tasks like building towers with Legos or pegs, he's attempted a couple simple jigsaws and even tried to hammer a golf tee into styrofoam. Adam has had good success getting Bug to do Legos at home:

Today I tried with him and he did EXCELLENT. He seems to be getting the hang of manipulating the blocks and pushing them together. Our goal is to get him to do increasingly more complex towers (so far we just have him build same color/same size towers. The above picture was Bug's own, unprompted creation. So proud!

We're also working on the therapeutic listening. Adam's figured out that Bug does better if he doesn't start on the first track, so we're working on getting him to wear the headphones for as long as possible. Today I got him to keep them on for a whole track and then a shorter 50 second stint right after. Slow progress, but progress. We really just need to make a concentrated effort about it.

I've been doing a ton of research on ABA and how exactly we're going to get Bug into some form of ABA therapy. I've been able to find some videos on Youtube (Seriously, I LOVE the internet for stuff like this! It's amazing what you can find!) and a lot of it looks like stuff that already happens in his therapies. One video I watched had a boy who was a couple years older and I could tell that he had gotten a lot of ABA because the session seemed so scripted. One of my worries with Bug is that we have to make sure he can respond to variations of the same situation. Especially since he has a fantastic memory, I don't want things to just be rote memorization for him because that's just not how life is. For example, someone might say "I want that toy!" or "Can I have that toy" or "I need something to play with" and those could all have the same response from Bug, even though they're not quite the same phrase. Basically, I'd like things to be as natural and "unscripted" as possible.


There's a form of ABA, called Pivotal Response Treatment (or Training) that is more child-led than therapist-led that seems to be a good fit for us. Part of the reason it was developed was for parents to use with their kids, since a therapist is not always on hand. The idea is to allow the child to lead a bit more and use their motivation to learn verbal, play and social skills. I have gotten a hold of Virginia Tech to do a training on the techniques used and I'm waiting to hear back from them. If that doesn't pan out, we could potentially do online training from the Koegel Autism Consultants in California (again, the internet is great!).

Lately I've been doing as much reading as possible and have found some great videos to watch too.  I am a little frustrated that it's not easier to find information on how parents can implement therapy at home. It seems like it is way more common for kids to just enter school and get the bulk of their therapy from school. Still, I know that we are constantly gaining more info on the best way to help kids with autism and that it is hard to implement changes quickly. I'm really hoping that I can get some PRT training this summer.

I need to get Bug registered in the school system this week so that we can have the school evaluate him and we can develop an IEP for him too. We are still waiting on the full report on Bug's diagnosis, although I think that should be here this week! It's kind of crazy to think that we've only had a diagnosis for a month. Seems like that was ages ago.

Leaving off with some cute pictures of Bug:

This is what autism looks like <3

{Mom Rant} I'm Only Going to Say This Once...

So I've debated on this post for a while, but I think I need to address it. I know we are so early in our journey, that maybe I will get worn out, that things could get a lot harder in the coming years...but I need to say this: I would not wish Bug any other way.

Autism is pretty well-known now. There's been a big campaign to raise awareness about it, and with diagnosis rates that seem to be rising, parents now at least have it on their radars. And unless you live under a rock, you're probably aware that there's a lot of controversy about what causes autism and even how to treat it. But the thing I keep seeing that just gets under my skin is that parents are afraid of autism, of having autistic kids. That having an autistic child is just some terrible burden.

I know I'm skewed. The thing about autism is that it's a really wide spectrum, no two kids have the same set of symptoms. Some kids are so severely impacted they can't talk, can't show or accept any affection, and will need lifelong support. Others you might never even know they're on the spectrum. Bug is somewhere in the middle. I don't know if we'll ever have 'normal' communication, but we have a great start and at least can get his wants and needs figured out, usually. He likes hugs and kisses and tickles and the little shows of affection, and sometimes reciprocates, but there is no doubt that I know he loves us. He doesn't seem to have the negative behaviors you often see--meltdowns over changes or violent outbursts, for example. So no doubt, we're blessed in a lot of ways. We of course have struggles, and will have struggles too. I guess what I'm saying is that there are a lot of people who have bigger hurdles and have been going through this longer and maybe that's why they say things like:

I Wish My Kids had Cancer (A Book written by a dad whose two children have autism)

and

God punished Toni Braxton by giving her an autistic child (For having an abortion, apparently. She also apparently said that she no longer feels this way, although that was not in the original article I read about it a few weeks ago)

The first one is really just terrible and the guy has caught a ton of flack from autism groups for presenting an overly negative and "scary" view of autism and parents of children who have or had cancer.

The Toni Braxton thing...well, there's actually a pretty direct passage from the Bible on this:
 1As He passed by, He saw a man blind from birth. 2And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" 3Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.… (John 9:1-3)

I do understand questioning why God gave me an autistic child. Sometimes it feels like it is my fault, that I did something wrong. I worry sometimes that with the hard pregnancy and not eating well, or having a second, harder pregnancy while Bug was so young and I wasn't able to devote enough time to helping him develop play and verbal skills. Mostly this is irrational. I know that. And I have a few dear friends who are so wonderful about reminding me that God chose me to be Bug's mom for a reason. (Side story: These friends, we're in a Bible study together. And they reminded me of this story from John. That Sunday we went to church and it was the Gospel reading that was preached on. Sometimes God isn't so subtle. :) )

Articles like these really get under my skin. I'm not naive, I know that people say controversial things to generate buzz about and sell their books (and for the record, I've read neither of the above, nor do I intend to). But I just cannot even fathom this. I cannot imagine having that kind of negativity about my child--and how much that would wreak havoc on the child. While Bug may struggle to express emotions or convey that he registers mine, I know that he feels things just as a normal child does. He can tell, at least to an extent, if I'm upset. I remember once, last summer when this was all new, Adam and I were talking constantly about therapies and I was expressing frustration and I looked at Bug, and he just looked sad. I realized that he was hearing a lot of negativity from me about it--and I realized how completely in the wrong I was. I apologized to him, and told him that we weren't mad at him and that he hadn't done anything wrong. Since then I've made it a point not to talk about him as if he wasn't there, and not to rant about our struggles in front of him.

There's a passage in The Reason I Jump, which is written by a teen with autism, where he says that he just wants parents to not give up on their kids. He says that he knew he was not doing what he was "supposed" to and that he felt bad about it. That he didn't want to be a burden. And as a parent, this just breaks my heart, because I can't imagine how rough that must be, for the whole family. I truly hope we never get to that point--that if I get that worn-out and jaded about autism and Bug that I seek help, because I think that's ultimately what would be needed.

I don't believe in sugar-coating things. There are aspects of ASD that completely suck. There are days I cry and swear and just feel angry about this whole mess. I worry a ton. Sometimes I feel helpless and lost. But I tell you this, I can say the exact same thing about Wiggle (who I tend to doubt is autistic) and I bet any parent will say the same: there are some really cruddy aspects of being a parent. Kids make things harder and you worry about screwing them up, or them screwing things up for themselves. That's universal.

And honestly, Bug has taught me to appreciate things so much more fully than I thought possible. We've gone from him saying the first sound a word makes to forming some complete sentences, in the span of about 18-20 months. He's started saying "sad" now when he's upset and I cried because he was accurately describing how he felt (and because when he is sad he is SAD and it's hard for me to not feel horrible with him). When he said Wiggle's name for the first time...when he accomplishes some silly task in therapy...when I hear him say full sentences to the therapists, with minimal prompting...my heart gets so full and so proud of him, he is just so amazing! When the kids squabble over books, I sigh and intervene and then think "Huzzah, this is developmentally appropriate!" Or him asking to walk with me and grabbing my hand, or being happy to see Adam when he comes home from work, or coming up for random snuggles and "ti-kulls".

Bug is not a punishment. He is no more burden than any kid is. I don't wish he was "normal". He is exactly who he is supposed to be and I pray that my heart will always be open to the lessons that God teaches me through being Bug's mother.