the waters edge.

We took the girls to the beach for the first time last week. Correction, we took ALL the girls to the beach for the first time. Both Eva and Maelle had already been to there but I  we hadn't been brave enough to take all three girls at once before now. The idea of the twins around a body of water with only "zone defense" parenting was never appealing to me. My brain works against me, most of the time.

But Justin got it in his head that we could do this and then invited our friends and their kids over for a day at the beach and on the tiny little sailboat that we own. Being that it is late August, I figured now was the time. I couldn't really avoid it much longer - I have seen snow in September here, after all.

So off we went. Life jackets and Mommy's paranoia...to the beach!

Side note: our "beach" is but a small one on a lake that would be considered small to most people...even most landlocked folks like us, consider this a small lake. Given that at one time, Justin and I lived on the eastern shores of Lake Michigan, yes, this is a tiny dot in the lake chart. BUT it was a body of water...a large body of water compared to my tiny 28 pound Maddy.

Eva and Maelle were very much at home at the beach since they had been there before. Maddy was quiet but excited. She walked right down (with her monkey backpack and me close at her side) to the edge of the water and watched the tiny waves for a few seconds and then wanted to continue in. She didn't make any sounds at first...just quiet observance.

She loves the water to begin with so it was no shock that she just wanted to walk right in the lake and keep going. I corralled her back to the beach to switch out her monkey backpack for her life vest. She played the morning away on the beach and in the water with me by her side. She learned the word "castle" and on her own, she would shout "SWIM! SWIM!" when she was in the water. When she saw Daddy and Bill on the boat, she wanted to literally walk through the water to it.

She ate minimal sand, so that's a plus. If you don't know, Maddy still very much likes to put everything in her mouth to taste it. She seems to love dirt, sand, and chalk the best. Gross, I know. There is a syndrome called pica that involves eating inedible things. It does follow some kids with autism but at 2, I think that a pica diagnosis is a bit inappropriate. She is aged developmentally 15-18 months (with peaks at 24 months) at this point...and lots of 15 to 18 month olds still eat everything.

She seemed to like the sailboat. Mommy sure didn't. As we shoved off on the tiny sail boat on the tiny lake...I looked at my kids...4 and 2 and 2. Okay, none of them can swim. I doubt that even my 4 year old could tred water to keep her head above. And there are 2 adults. I don't like those odds. YES, they all had life jackets on but still. My anxiety was at an all time high. I had visions of Maddy climbing out of the boat, Justin diving in after her, thus knocking the boat off kilter so it dumps the rest of us out. I would be in the water trying to keep Maelle and Eva afloat along with myself??? Then I just told my brain to shut up! 

We did well until Maddy did start to climb out of the boat and I gave Justin that look that says GET US OUT OF HERE. Only we are on a sailboat. And suddenly the wind died. Oh God. Okay. I'm supposed to trust Him. So I stopped panicking and became Distracting Mommy.

"Does anyone see a bird? Let's look for a bird," as I overly gestured.

Looking in the sky there was nothing. Come on....there has to be a bird. I need a bird. I need some kind of distraction while we wait for the wind to come up again. Then suddenly...in the middle of the lake there was a hummingbird. A hummingbird? In the middle of the lake? Yep.

When we moved here...in the midst of my 2nd bout of postpartum depression when the twins were infants, I often would look out the window in hopes of seeing something uplifting and there was always that "same" green hummingbird to greet me. I don't know the life span of hummingbird (wiki says 3 to 5 years) but the symbolism was outstanding. Whenever I seemed to need some kind of uplifting assurance...there was a hummingbird. And there she (or he?) was again. I don't know if hummingbirds usually fly across the lake...maybe they do...but this one was so close to us, literally we could have reached out and touched her.

The wind picked up and off we went back to shore. Safe. Sound. Land.

Maddy and I walked the beach some more as I soaked up her tiny innocence. She was quiet and I wondered what she was thinking. If only I could crawl inside that little brain of hers and see what was working in there. If I could just go in and see what she sees. Hear what she hears. And KNOW that she was ok. To KNOW that someday we would be walking this beach and she would be running and laughing and telling me about every new thing she found. To bring me buckets of sand with her sisters and say "look Mommy! Look what we made!"

I don't want to put a damper on a great day. It was a good day. It was a stressful day for me but for every other player, a great day. That's what I wanted it to be for them. Just a fun day at the beach. With no care in their minds. Just fun. Happiness.

The thing about becoming a mom is that you can lose that innocent fun. You can wrap yourself very tightly in a web of worry. A web of unknowns. There are no crystal balls. We don't hold the future. We are intrusted with these tiny beings to protect, nurture, and love. (I mean dads too...I'm not trying to exclude you men)

On Friday we had our first therapy day "in the city". It was a good day but a hard day. The twins had a good time. Maddy did the best with the new surrounding. Despite her autism...she adapts to change just fine. She doesn't like the transitional change from activity to activity but as far as daily schedule goes...she is VERY adaptable. She loves to go places and see people. LOVES it. (so non autism there) Maelle is shy. She didn't like it much.  But she did well...she went with the SLP (speech and language pathologist) and I sat in the waiting room taking it all in.

There were all sorts of children there. Mentally handicapped. Downs. OCD. Some appearing to be spectrum kids. Two girls struck me...while they were 8 or 9 from their outside features...they seemed to be functioning around 2 or possibly 3. I don't know if those girls were spectrum kids or not. It's not like picking out veggies...spectrum kids are as unique as their fingerprints. Either way, it was eerie to watch them. Not that they were eerie themselves but just the gravity of everything. The weary parents were talking to the therapists about pool therapy. The parents looked exhausted. They looked how I felt.

I looked at my borrowed People magazine trying not to be that annoying onlooker gawking at them. I wanted to cry. I imagine that was how parents of newly diagnosed cancer kids felt when they toured the cancer unit of Mayo clinic. This shock and awe type feeling. Not that those amazing kids were scary...just the situation was. The reality was. Wondering if I was going to be them in 6 years. And some new mom will be sitting in my seat trying not to burst out in tears.

I don't know. That's just it. I don't know. And I kept looking at these new therapists like "are you really good enough for my Maddy? Are you the most qualified person I should be working with? Is OT really going to help or will it be a waste of my time? Speech play therapy? What is that? What are you doing that I'm not already doing at home? Don't you understand???? Doesn't anyone understand this? She is wandering farther and farther into the lake and pretty soon I won't be able to reach her...she's on the beach with her toes in right now. We gotta turn her around. Turn her from those dark waters. wrap her in our loving warm arms and run. RUN. Thinking...that was so close. We almost lost her!"

Autism is our modern age epidemic. It is. 1 in 91 kids have it. In some form. And while it is so common. The treatment is not. I asked the OT therapist (I don't even know what her name is..how bad is that?) what exactly she would be doing with Maddy and she gave me some vague response about working out her sensory issues. I nodded but thought "huh?" I should have said...no...what are you DOING. Like the actual activity. And maybe that's what will come out of my mouth on Friday when we go again. I'm not saying that OT is worthless...i just want to know what the heck it is. And what are the goals. Fine motor skills. Okay I get that...she does have problems with her hands....sometimes it seems like she doesn't know what to do with them. So how do we fix that? Tell me HOW.

I think the problem is that we went from no one hearing of autism to now everyone hears it. The problem is that most of us still feel like we are alone in this battle (I mean as parents, I have a wonderful support group of friends that are with me through this) - if it is so common, where is everyone else? Ashamed? In denial? Embarrassed? Where are you?

I believe that autism is a medical disorder. Not a mental disorder. For whatever reason some wires get crossed in the brain and the child just stops developing or regresses. Maddy hasn't regressed...she just stopped at 15 months. Just stopped. So there is nothing embarrassing about autism. Is cancer embarrassing? I don't think there should be any differential. Instead of having a brain tumor, she has a brain connection problem.

I had a great friend (actually ex boyfriend) in high school who had brain cancer. He was an amazing person. He was exceptionally smart. He called his tumor Betty. He had great humor about it...he knew he wasn't going to make it but he was gonna LIVE. He was going to do everything he could to fight Betty (including two brain surgeries) but he would not hide it. He was not ashamed of it. He knew it was awkward for people to except his boldness about his cancer but he didn't care. It was part of his life. It did not define him...just a part of him.

If he were living, he would tell me to march forward to find Maddy. To recover her the best we could. To never let the autism win. To never be ashamed of it. To never fear it either. Autism does not define Maddy. It is a part of her life...whether it remains to be a part of her life for her entire life remains to be seen. I will not give up on her. I will not hide her either. She is an amazing sunshine of life. Radiant and beautiful.

Autism is dark waters. I feel like I'm trudging through a thick cloud of therapies and remedies and experts...trying to decipher what is best for Maddy. Thank God for her light. She is so bright.