{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.

Oh the difference 24 hours makes

God must have heard my prayers yesterday because not long after I blogged, I got a call from Commonwealth Autism Services that they had a last minute clinic cancellation for this morning if we were able to make it. Sometimes, it is so so nice to be stay-at-home. Adam was able to take the morning off so we took the whole gang in. I have to say that I am extremely proud of both boys, Bug handled the evaluations and transitions really well and Wiggle did great for being woken up so we could go.

The first part of the evaluation was an assessment of Bug's social and play skills. It was just Bug, me and the evaluator and I was mostly there as an observer and only offered comfort to Bug as needed. The other specialists and Adam sat behind a one-way mirror. A couple of times the evaluator had me try to interact with Bug, but mostly I stayed out of the way. Bug was not real cooperative with the tasks and wasn't real interested in games suggested. He did enjoy watching bubbles being blown, a little rocket launch toy and surprised me when he helped put "candles" into a playdough "cake". Overall, we felt like he was pretty well represented with the activities.

After that assessment, he went with a speech therapist and an occupational therapist into their "sensory" room while Adam and I were interviewed by the clinical psychologist. Basically a lot of questions about whether Bug does certain behaviors and such. This part is always hard for me because there is so much that Bug doesn't do that developmentally, he should.

Once we finished our interview, we met with the whole team to discuss how things went and where we should go from here. It was A LOT of info to digest (especially while trying to keep two littles happy) but we'll get a report from them in a month or so.

We got to hear from the ST and OT about his evaluation with them. They said that initially he was really really uncomfortable and has a lot of anxiety when he's not with us in an unfamiliar place with unfamiliar people. They quickly realized that they weren't going to be able to work with him together, so they did one-on-one while the other observed. Verbally, Bug has a lot of the building blocks he needs, but he mostly relies on reciting phrases he has learned "I want ____" etc. or using nouns. The ST noted that he enjoys sing-song and rhythmic talking and that he seems to "read" stories using his jargon with a few real words intermingled. One thing she said that I had to laugh at was about knowing how hard to push him without going too far. Didn't I just say that yesterday? She said one of the biggest things is meeting him where he's at, pushing a little but stopping once you have success. He is intelligent and once you show him (model) what you want, he will do it, so you leave him alone.  The OT noted Bug's anxiety levels were pretty high, although he kept himself together with no tantrums (big progress on this!). She said that anyone who works with Bug needs to respect his anxiety and give him a little bit of time to adjust to the environment rather than trying to pull him to task right away. Agreeing with how Geri evaluated Bug and our notes, she says he's a high arousal kid. He is constantly moving and really enjoys tactile stimulation (like touching, hugs, etc) She said that they had some good success when she put on some "zen" type music, had him swing for a bit and then he was able to sit for tasks better. She said that he couldn't handle a long time in the swing but would keep coming back to it.

Ultimately, the team agrees that Bug has a lot of the typical autism signs, although not really any of the negative (behavioral) symptoms (mostly the anxiety). They suggested that we look into Applied Behavior Analysis (ABA) therapy and that would really help bring the social abilities up.  They also really encouraged us to get the ball rolling to get into the public school system. They said that there are a lot of options for us even if we don't want him in a classroom. Developing and maintaining an IEP for him would allow us to access services as we felt we needed them. We are a little bit more nervous about this aspect, just from all the stories we've heard from friends and such, but they sound super supportive about making sure we know what we're doing and helping us through the process. Unfortunately, I can't say a whole lot else about the "bottom line" stuff until I have the report.

I'm glad the evaluation is done and that Bug didn't seem too bothered by it. Personally (and this is all still very fresh, as we just got back 4 hours ago) I have A LOT of emotions about it, kind of all over the board. It is always gratifying to have others note the issues we notice and offer suggestions for support. I'm not surprised being told that he is on the autism spectrum. I'm a little sad, because I know that this is a lifelong thing, he's not really going to snap out of it--but I do have full confidence that we can make a lot of headway. I feel lost too, because now we have to make all kind of decisions about therapy and schools. We have a ton to learn. I need to learn how to encourage him and teach him in ways that work for him. To some extent, I feel like I need a crash course in OT/speech/teaching techniques so I know what the heck I'm doing with him. I'm freaked out by the prospect of putting him in school and into such a structured environment because I really don't feel like little kids belong in super structured environments. And then I feel guilty because everyone else seems to disagree with me on that. I'm not trying to be pessimistic, because I'm not really. I love Bug so much and I promised him and myself that I will always always fight for him. He forgives me for making mistakes, probably more quickly than I forgive myself. I guess we just have a steep climb of learning ahead of us.

Thank you to those who said prayers for us and thought of us today. We would really appreciate continued prayers as we learn to accept our diagnosis and plan for therapy and education for Bug and for the family.  <3

Autism Awareness Month--A Mother's Plea

So I haven't said much about it, but April is Autism Awareness Month. I've seen loads of news stories and puff pieces about autism this month. I've also (rather coincidentally) been reading books by people on the spectrum and finding blogs to follow. I feel a little awkward about the whole thing because we don't know if Bug is autistic or not. But the last few articles I've read having hit on a point I think I should talk about a bit.

Autism spectrum disorder is a really, really broad spectrum disorder. Some kids can hardly function on their own, are non-verbal and struggle with the most basic interactions. Other kids are highly verbal (even advanced) and might just seem quirky or "weird". Every single child has a different set of symptoms and triggers and sensory issues. Because of this range, it can be really difficult to spot an autistic child. And sadly, a lot of people don't know about or acknowledge autism as a real disorder. They say kids are just hyper or rude or shy or oblivious or naughty or a host of other negative things.

So here's my request: When you see a kid doing something "naughty" or who seems out of control or what have you, before you judge that kid, before you judge his parents, stop. Think about it. That kid could have a ton of issues that you know absolutely nothing about. He could be screaming on the floor because the lights are overstimulating and he can't tell you because he can't make the words come out. Or it could smell awful to him. Or maybe something stressful happened there. The kid bouncing up and down excitedly isn't necessarily just hyper. He could be jumping because the sensory input into his joint is stronger if he jumps. The kid who has to touch every. single. thing. might just need that extra stimulation.

We, as parents, know. We know how our kids look, how they make noises that are out of place. And quite frankly, we see the looks they get and we get. But we also know that we still have to get to Target and it's our job as parents to teach our kids to function and behave appropriately in public.

So instead of gaping, or giving a stern look or a stare or whatever, maybe give a kind smile and move on. And if you've got kids, encourage them to be kind. It's ok for them to ask questions. I can explain to people why he jumps or flaps or finds it hard to talk. I know it's hard to be friends with someone who doesn't know how to show that he likes you or even notices you, but they deserve and WANT friends too. Everyone has weird traits, and everyone has amazing talents. Let's all just try to appreciate our uniqueness a little bit more. Ok? Ok. :)

Here's a couple of links to books and articles I've read lately:
Be Different by John Elder Robison
My Clones in Action
Busting Autism myths with a camera

Will post again later this week, after our first OT session! Can't wait! <3