That family gathering we went to... He walked in, and the first thing he did was go downstairs, alone. Away from everyone. To play with the cars he remembered were down there. Shaun and I were a little disappointed, not surprised, but bummed a little. We had such hope for the day.
Shaun gave me a great, reassuring smile, and said, "We'll always have yesterday." (I LOVE him!) I let go of my hope and went on like usual. Except it wasn't "like usual" after all. Yes, Anthony wanted to play with the cars, but he also wanted to play with the kids and talk with the grown ups. It was amazing to watch!! He played Pictionary, the Wii, cars and at one point was sitting on the couch with a little 3 year old sitting on his feet, bouncing the little one up and down. I noticed all the little kids gravitating to him more than they ever have. And he was talking more with everyone!!!! It was so very memorable! I will treasure that day. That whole weekend.
But it sure made these last 2 weeks all that more tough. As the program explains (or warns), it will get worse before it gets better. Well, we hit "worse". He's arguing, yelling, name-calling and not listening so much. He gets so frustrated so easily. Angered quick too.
Today, he was crying (which he NEVER does) because his hair wasn't "just right". Although, it was probably more upsetting to him that I couldn't understand what he wanted exactly. Or that he couldn't understand that EVERY SINGLE hair can't lay down, more than crying about his hair.
He is fighting me huge on the home exercises. (TONS of mommy guilt here. But using bribery to cure that.) He even refused to go into therapy one day and it was a fight to get him in. (I didn't want him to think if he threw a big enough fit, that we would leave, thus setting a new routine I am not keeping.) Once inside the room, he was pretty physical with me. I left him with the therapist and walked out the door... crying.
A few days prior to this event, we got his food sensitivities and metabolic tests back. They have him do a blood and urine test to determine if there are any digestion issues getting in the way of his learning and contributing to his behavior issues. We go on an elimination diet for 90 days to allow the gut to be healed, and the brain to have its optimum level of functioning. So now we are on a "food- free" diet. Just kidding. We are basically on a "if it came out of the ground, or off a bone, you can eat it" diet. No gluten, dairy, egg, soy, sunflower, casein, and 20 other foods. Not much left. Earlier that day, I was so disheartened to spend 2 hours at the store (time I really don't have right now) reading labels to find that we really have a stunning amount of limitations in his diet. Did you know that every chip and cracker out there is made in canola AND/OR sunflower oil? What the heck? "And/or"? Just pick one already! I purchased only one item that day. So my tears were already closer than I wanted them.
But his tantrum just hurt. It hurt, because he's 100 pounds and very strong. It hurt, because he's still my baby. It hurt, because I was mortified that people witnessed it. It hurt, because he is still so freakin locked inside. I hate watching him go through this. And selfishly, I hate dealing with it sometimes. And it hurts, so very deeply, to have been able to see those amazing dreams come true and answered prayers revealed, to feel like somehow it is gone. That we got those incredible moments, but that they were fleeting. And I am terrified they may not return. As I sit here, spilling over in tears as I spill out my guts, here's the reality folks! Sometimes - this just isn't what I think I can do.
I try very hard to always be positive, patient and encouraging. Most of the time, I think I am. In fact, on this blog even, I think I have always shown that side. I have been accused many times of wearing "Rose-Colored Glasses" throughout my life. I believe I have a pair. Ninety percent of the time the rose color IS red. Love, joy, treasured moments, laughter, snuggles, comfort, peace and strength. I feel honored to have a child like Anthony. (And my daughters!) And I feel blessed by his gifts and the lessons he's taught me. I wouldn't be any of the things I mentioned, (positive, patient or encouraging and many others) without the relationship I have with him. And I feel incredibly grateful to have him. In fact, some other time, I'll share how having him has brought me to exactly where I am - the happiest I have ever been.
But there are times. When the rose color is blue. When his tantrums are tough. When he's not invited to things, but the girls are. When his friends try to interact with him, and he shuts down. When he tries so hard to communicate and then gives up. When he won't move until he's good and ready, but we're late and rushing him just makes it worse. When I feel guilt, over everything I wish I woulda, coulda, shoulda. When the other people look at me like I am a bad parent when he won't listen or "behave". Or when people look at him, and make judgments about him. When I really, really want to take better care of myself, and just can't figure out when to fit me on my list of things to do. And when I finally have the chance, I am too damn tired to do it.
Here's the real deal.
I am tired.
I am sick of driving to Woodbury.
I am always rushing, yet always late.
I am trying really hard to take really good care of my family, but I am pretty sure it's still not enough.
I want to just quit sometimes.
I want to sleep.
I want to be alone.
Life is just not always what it seems, or what you think it should be.
Insecurity creeps in un-expectantly and takes your breath away.
At the end of the day though, despite what we want or how we feel, we still have to fight for the things that matter. Sometimes really hard. Because they matter.
So, as I sit here writing to whoever reads my random thoughts, I am also praying. Praying to God, that the worse moves through as promised, and we get to the "better".
My son is changing, I know it. I see it. I feel it. Even though he is still struggling, the intensity and lengths are still improving. He does calm down faster, and more independently. He is growing and he is still more social. So even though we have hit the rough patch everyone does, it really is still helping. This is supposed to happen. So far, he is doing everything they said he would.
So, Dear God, please get us through this. If what we saw was a glimpse of things to come. Please God, bring on the full view. And let it be Red Roses.
