Last Friday evening I was able to attend another glorious Mother Daughter Banquet with my beautiful Grammy (maternal grandmother) who is 101 years old. What a blessing to be able to attend together another year! Also in attendance were my own Mother, Ruth; my Sister, Rachel; my Aunt Jennie, and two of my Grammy's very special friends, Troi and Janie. We had a marvelous time and my uncle Ken (mom's brother, husband to Jennie) was one of the all-male team of servers. We ate lasagna and all kinds of yummy things, heard music from the Children's Choir, and received roses. I never lost site of the fact that I'm not in control and I never know when THIS might be the last time, so I was quite grateful that we were all gathered together again this year to celebrate Mother's Day with Grammy. It was very important to me that I was able to attend again this year. I'd left early from work Friday afternoon and traveled to where my Grammy lives, and I stayed the night in a hotel room with my sister, which my Papa so graciously paid for as a gift to us girls. It was such a wonderful time!
However, this meant I didn't see Eli from Friday morning, when I left for work, until I got back home late morning on Saturday, a little over 24 hours.
E was really excited when I got home and we hugged a lot and said how much we missed each other. We were home together Saturday afternoon, but then I left again....
Saturday evening the girls from my Clump (my small group from church) all went to see the production of In The Heights, http://en.wikipedia.org/wiki/In_the_Heights which was fantastic!!! I'm ready to head for New York and see a Broadway Play now!!! I left the house about 5:40 p.m. and didn't get home again until nearly 10:30 p.m. Eli was already in bed, so I didn't see him again until Sunday morning. But let's backtrack a bit...
Before I left Saturday evening to meet the girls, Eli had a pretty serious meltdown. In fact, it was so serious I now have a whole new set of concerns about his teenage and adult years, but we'll not focus on that today. Let's just say I've not seen Eli that angry and out of control in several years. If ever.
Am I to blame? Was my absence the night before the reason he became so extreme in his frustration with his video game, and therefore so quickly and severely enraged when his dad spoke to him about a behavior he'd just presented?
The whole scene occurred right as I was getting out of the shower. There I was, running around in a towel trying to regain control of the situation (wasn't going to happen) and I nearly canceled my plans to attend the play because I wasn't going to leave Ben and Ash alone to deal with it all. But after 30 minutes or so Eli got himself under control after spending some quiet time in his room. He came out again, after he picked up all the items he'd thrown about during his fit (that was required before he could leave the room; first calm down...then pick everything up and clean up the mess he'd made, then come out).
Eli came first to me, then with a little prompting, he went to Ben and apologized. He was doing alright, so I went to dinner and the musical after all. I called home to check on things, and all was well. Eli was keeping it together, watching a movie and doing just fine.
The next morning in church, as I stood on stage singing with the Praise Team, I could see Ben leaning over to speak quietly to Eli and I could see we had a problem. I recognized the look on Eli's face. The scowl that tells me a dark, quiet room is needed. Now. Possibly ten minutes ago.
By the time I went to sit down, he was still seething. He was angry because he couldn't go to the nursery where Ash was serving that day. Eli's too old for the nursery, and they had several kids down there that morning... there was no need for him to go in there as well.
He didn't like that answer.
I was fearful he would erupt, the anger was just rolling off him... so I asked him to take a walk with me. He refused several times, but I whispered that I may have been asking nicely, but that I was indeed insisting he come with me. He threw the hymnal he was holding to the side and stomped out of the sanctuary. There was no screaming, no tantrum however, so Thank God for small favors.
I spent my Mother's Day morning in my church office (where I work my second, 1/2 time job) with a livid ten year old. He'd snuggled with me, leaned into me for about 20 seconds when we first went into the room and allowed me to comfort him, and then the anger took over and he stormed away from me and sat on a different couch, not communicating or even looking at me.
Again...is this all because of me and my lack of being there?
Eli spent ten minutes raking his fingernails across the fabric of the couch and breathing so hard and fast I was sure he would hyperventilate. I kept the lights out and talked softly about the things I could see out the window...how green the leaves were, how the rain made me sleepy, how I remembered what rainy Sundays felt like when I was a little girl, and how they feel to me now.
I asked him if he even knew why he was feeling so mad.
Eventually - after a lot of encouragement - he was able to let me know without talking to me (he just wasn't ready for that yet) that he sort of knew what he was mad about...but he didn't really understand why he was feeling so severely angry. He was mad that he wasn't able to go to the nursery with Ash. But no...Eli didn't understand at all why his emotions were so hostile and so overwhelming the last few days.
After about half an hour I knew he was going to be okay. I'd missed the entire service and I could hear singing and I hoped someone had seen me leave with Eli and understood why I wasn't there singing with them.
Eli started getting goofy and silly acting, overcompensating with baby-talk and silliness... because his anger had dissipated and he was now feeling so much better. When he's feeling super happy, the goofiness emerges.
Ben came searching for us, concerned and confused, but found us in a stage of healing. We scrapped the eating-out for Mother's Day plan and exchanged it for a trip to the grocery store instead - where Ash and Eli waited in the car, because Eli didn't need the over-stimulation of the grocery store - and then we proceeded home to have a glorious afternoon of rain-induced napping and some much needed downtime. At least that was what I did...I'm not sure what the boys were all doing at that point.
He's been fine ever since. I warned his teacher he'd been having some serious anger issues all weekend long and to watch for signs, but he's been pretty even keel this week.
You know I've always been good in a crisis. I'm the fixer. I'm the protector. It's later, after all the bad stuff has passed and is over with, then...then I fall apart. I remain calm and strong while I have to, but when it's safe, I have my release. Usually this involves tears and utter exhaustion.
This weekend - as fantastic and glorious as many parts were - it completely wore me out. More than that it brings fear to my heart, as well as a greater sense of how important it is to make Autism Awareness a top priority. Not just for parent and teachers, but for entire communities.
Witnessing my beloved, precious child's meltdown, his anger, his hostility, his complete loss of control.... everyone needs to be aware of the struggles our kids are dealing with now!!! And we parents need help. We need help now! Because in a decade these precious babies of ours are going to be adults.
I'm prayerfully hopeful that between now and then My Eli will have learned coping strategies that allow him to keep it together. But what if he can't? Then I want all of society to be aware, to recognize the signs, to HELP! Police officers need training. Employers need training. Programs need to be available to help society as well as our kids and us. Compassion needs to flow.
People need to help!
Communities need to come together to embrace our kids who will one day be adults. Parents need financial support now in order to obtain the therapies for their children NOW. For example, Eli could really use help with pragmatic speech therapy...meaning he doesn't need help learning how to talk, he needs help learning how to have a conversation. Especially with complete strangers. He struggles terribly with that, and what adult doesn't need that skill? But he didn't score low enough to receive the therapy through the school system, so we'd have to go to a private speech therapist and pay for it out of pocket. Even if insurance helped somewhat, shelling out a co-pay week after week, month after month is more than we can do.
While I recognize that there's a lot of media coverage happening now because Autism is now considered an epidemic, and in April everyone was jumping on the band wagon to yell, "Hey! Look at me! I went blue and I'm aware!" -- and that's great! Really! We NEED awareness!!! -- but it's May now...
and my kid is still on the Spectrum...
and we still are severely limited to what we have access to in order to help him. I know there are a lot of people out there talking and advocating, and again, that's really great.... but I guess I have this message to You....
YOU who are in the position of making these decisions, of making these programs happen, of making the insurance and financial assistance based on diagnosis, not income, available so that we parents can take care of our children now, to help teach our children the skills they need so that in a decade they can more easily function in society in a way YOU expect them to....
YOU are not moving fast enough for my child. He needs you now.
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