Letting Go of the Worry

"Let's go <insert fun thing that families do together> with the boys."

This is a phrase that is spoken in our home regularly, and is usually met with a resounding NO in the form of some good excuse not to do it. The boys are tired and cranky, it's late and they still need a bath, we should save money, etc. The list of excuses goes on and on. The "real" reason we make the excuses? The "true" reason we skip out on experiencing things other families do on a regular basis with little to no issues? ASD (Autism Spectrum Disorder).

I can't tell you how many invites we receive from friends to fun events like birthday parties, BBQ's, beach days, etc. I often RSVP, usually with a "maybe," or a "we will try to make it," because I know deep down (hopeful as I am that we will go and have fun and with relentless guilt) that when the day rolls around chances are slim to none that we will actually be brave enough to face the world, kids in tow.

Max will be 5 in November and is going into his 3rd year of the EELP (Early Exceptional Learning Program) classes at our local elementary school. While he has made a lot of progress, he hasn't made nearly as much as I had hoped he would in this amount of time. His eye contact has improved (somewhat) and he is slightly more communicative (we have reached a point where he will say "I want _______"), although if he wants something, his main form of communicating is taking your hand and walking you to the item, or items, and hoping that you figure it out (doesn't sound exhausting at all, right?).

Max is very intelligent. He can count to very high numbers, say all of his colors, point out and name animals, objects and foods. He memorizes entire videos, books and songs and recites them all day and night (this is called "scripting" and is thought to be a way of coping or "stimming" and it is Max's main form of communicating). He understands everything we say to him and around him and he will typically follow instructions if you are very literal (go take a bath, go get in bed, take off your shoes, etc).

Yet still, at almost 5, getting Max to say a whole sentence is next to impossible (sometimes you can walk him through it by having him repeat the words). I can't begin to describe the frustration and sadness that comes from knowing that my son wants to communicate with me but can't. I try to stay positive because I have a lot to be thankful for and a lot of love in my life, but I do have regular bouts of hopelessness, guilt (there must be something more we could do, right?) and depression mixed with anger and frustration. I guess that just makes me human.

I think we always knew Max was different. As a baby he was very easy and required a lot less coddling and affection than most babies do. He always seemed to be in his own little world, stacking and lining things up, sorting things, watching videos for long periods of time without losing interest. It was pretty obvious by age 2 that things were not right. Max didn't (and for the most part still doesn't) respond to his name. He wouldn't make eye contact with us or anyone else. He has never said "momma" or "dadda" as a way to communicate with us (talk about a dagger to the heart).

At his doctor's recommendation we had his hearing tested, we saw a neurologist and they performed an EKG, we went along with the sedated MRI. All tests came back fine, and so we began in-home speech and occupational therapy. At 3 years old we enrolled him into his current school thinking (hoping) he was just a late bloomer. But here we are, going into his 3rd year and praying for a miracle, for the light bulb to come on, for something to "click." For my son, the most precious little guy you will ever meet, to be able to simply communicate with us.
  
As a mother, I never saw this coming. It never even crossed my mind that I might have a child with special needs. I can recall a pre-mom life conversation with a friend that went something like "I just don't know how parents with special needs do it all." These parents always seemed heroic to me, yet here I am. Not heroic in the slightest, barely holding on to my sanity some days and almost never feeling like I am doing all I can for my son.

It's difficult to watch your children suffer in any way. When we take the boys to the park, Miles gets right in there with the other kids, chattering away and making friends so easily. And then there's Max, always the lone wolf in the crowd, stimming away in the mulch or the sand and ignored by the other kids as soon as they try to talk to him but receive nothing in return. It is a sight I will never get used to, seeing him alone in a crowd of children. It just tears up your insides. One of my greatest fears is that Max won't ever make friends, that he will be picked on because of his strange behaviors and quirks, that he will be ridiculed by other children who don't understand that he is just like them but can't find the words to say so. Is that a rational thought? Probably not. But it's a thought I would guess every autism mom (or any mom, for that matter) has had.

Last night my mom invited us out for ice cream (oh no!) and we accepted, with fear in our hearts as usual. We decided to go to Friendly's (haven't been there in years but it seemed like a place that could tolerate any unpleasantness from our table). As usual, it was complete chaos for 80 percent of the meal. Miles was really good (he is actually a pretty easygoing guy considering he is in the "terrible twos"). But Max, in his usual fashion, was acting out almost the whole time. Reciting the Spongebob playing in macaroni and cheese videos he is currently obsessed with, squirming in his seat, slamming the salt and pepper shakers on the table, making strange noises, squealing, getting frustrated, etc, etc. As usual, I had the sick feeling in my stomach that I always get in public when he acts out, and an array of thoughts littering my mind. Are we ruining everyone else's meal? Is that old lady behind him getting pissed yet? Do they know my son is "different" or do they just think we are being shitty parents? We deserve to go out to eat just like everyone else! If anyone looks at Max weird I am going to lose it! You get the point.

When we got up to leave, I stopped with Max next to the two old ladies behind us. I introduced myself and Max to them and told them that Max is autistic, he is unable to really communicate verbally and that I appreciated them being so gracious about all the noise he was making during their meal and that I hoped it hadn't been ruined. The one that was right behind Max looked at me and said "We thought he might be autistic. It's no problem at all. He is so cute! Thank you for talking to us."

It gave me a little bit of hope and a lot of relief. Maybe they were just being nice because they weren't expecting me to talk to them but I think they were sincere. Maybe I should stop being so scared about what others think of Max's quirks and start accepting more invitations (regardless of how much chasing and calming might be involved). Perhaps I should worry less about the reactions other people will have to Max and worry more about allowing him to experience life without limitations. Maybe this is when he will truly be able to let the little boy that's trapped inside come out to play.