Yesterday morning was a 'rest' day; I long run on Sundays, so Mondays I usually lounge, do a bit of yoga-- okay, Mondays, I usually dont do squat. I take 'rest' pretty seriously so I walk my butt from the couch to the fridge to the couch, rinse, repeat. And yoga in the evening. So, there: I do something. But yesterday morning, I got out of bed, suited up, and went for a walk. I wanted to run, but I also want to avoid injury, so a walk it was. To make sure I didnt run, I left my music at home and let nature be the symphony of morning instead. It was a tad humid, with the last vestiges of summer lingering and starting (just slightly) to make room for autumn. I'd gone about a mile when I saw something peeking out from the sky. Red, orange, yellow, green, blue, purple... faint lines in a crescent and broken by a cloud. How can you not smile when you see a rainbow?
As I walked, I kept glancing up and, even when I turned, I would look over my shoulder, just to make sure that the rainbow was still there. It was and the cloud dissipated so that, eventually, I could make out the entire thing. It 'ended' somewhere where the border of town is on one side and, low and behold, at my house on the other. (Okay, so not really... the 'end points' change the farther out or closer in you walk, but you get the idea).
Maybe a mile and a half into the walk, large drops of rain started to fall and turned into a drizzle, all while the sun stayed on the other side of town, continuing to reflect against the raindrops and cast that crescent of color across the darkening clouds. At one point, as I looped around the neighborhood on my walk, I lost sight of the rainbow and my heart fell a bit, but just as I came out a few blocks down, there it was, still there, having never left in the first place.
The reflection of light against water, of hope against tears... Something always present, even if we arent able to see it... Sometimes the rainbow only disappears because we are so wrapped up beneath it that our vision has shifted; all we need to do is come out on the other side to see it again... Sometimes it only isnt there because the sunlight goes behind a cloud during a storm or because, by the time it returns, the water has already dried.
On my walk, a man I'd passed looped back around and found me, a smile on his face. "Did you see the rainbow?" he asked with excitement. I responded with my own smile, assuring him that I did. Maybe he was chasing rainbows too...
My many thanks for all of the comments, emails, texts, phone calls, chats, and FB emails that I've received over the last few days. I have been overwelmed by the outpouring of love, hope, and sharing that those I know as well as those I dont know have heaped on in droves. Thank you for sharing the stories of your children- those with spectrum disorders, speech delays, and just those who were a bit off the 'average' in their development with no diagnosis or known concern- and your journeys with me. The support has been overwelming and has considerably lifted my spirits. A friend of mine sent me an email that she titled "Motherhood is not for the faint hearted" and one of the things she shared was "When you become a mother, you just don't know the way the road is going to turn and what challenges lie ahead. It is my belief that I have learned more about myself and life from being a mother than my children have learned from me. Their journeys are still before them." Those sentences have been with me since her emailed pinged my inbox and I still get a chill reading them. How true... How very true...
So, for all of your words and thoughts, thank you. Truly. I may not have responded to you personally, but everything you've shared has meant so much to me.
I dont know what the road holds for us or for Bobby (or for Maya, either). What I do know is that we all, in one way or another, have challenges and special needs. Some of us hide them better than others, for some of us they are deeply on the inside instead of a part of our physical being that we have no choice but to show the world, and for some of us, we've learned to deal in a world that is meant for 'average' and 'typical'. 'Atypical' isn't bad; it's just different. I'm atypical; so is my son. In some way, we all are. As my brother said to me recently, everything is all about finding a way to just deal and move beyond... move foward.
We've been really lucky to have such a wonderful EI team who cares for Bobby and wants to see him succeed. In six months, he has come out of his shell in so many ways. Their help has been invaluable. Next week, we close the door on that chapter of Bobby's life, and it is sad to see J, who we've been with for those 6 months, and R, who we havent worked with as long, go. We'll all miss them, but what they've given and taught us will continue to play a role in how we work through issues. We've talked about it a lot and, although our course of action may not work for everyone, it's where we are right now.
I've emailed Bobby and Maya's preschool teacher and, if my first feeling of her being a good teacher wasnt spot on, then her email was a hammer hitting me in the face. This woman? Wonderful. We havent even had a school year with her yet and I love her already. I sent her a copy of his recent speech eval and in her email, she thanked me for sharing it then went on to give me some of her personal experiences working with children who struggle with speech. I was in tears at the end of it. She clearly understands and wants to help Bobby succeed in school and, if he needs extra help, I have no question that she will reach out and make sure that we are able to get it. She also, God love her, is willing to have the kids come into the classroom this week and next to meet her and get a feel for the space before school starts in two weeks. Reading her words took a huge burden off my heart. The school year hasnt started yet and it may be rough; we may have to change our plan a hundred times. But I know that we have a partner in the journey with their teacher. Amen for that.
We have decided to decline a psychological evaluation at this time via the IU. If Bobby isn't adjusting to preschool well or if his teacher suggests after a few classes to get one, we will heed her advice and have it done, but prior to the school year starting, we aren't willing to undergo the possibility that he will have another bad experience with an evaluator whom he may visualize as a 'teacher' figure. I had enough of a hard time getting him back to ground level after the last eval; neither Peter nor I want to skew his first few school weeks with a negative experience. This will delay his IEP. We accept that as a consequence and are okay with it.
We have also decided not to pursue interim therapists. EI told us that the IU is required to honor his 1 hour of special instruction (speech) and 1 hour of OT until they complete his IEP and make a determination on services. The flip side is that the therapists given wouldnt be the therapists he'd be assigned post-IEP. It took Bobby a while to warm up to his therapists at the EI (and they rock); even today, with the last 2 weeks being vacation weeks from speech, he wasnt as responsive. He knows J, but it just takes him a while to set his routine and go with it. If the IEP does come down the pike in the next 2 weeks, we are not planning on having therapists in preschool for at least the first month, unless his preschool teacher asks us to. We want to give Bobby the chance to bond with Miss M and for her to find her own groove with him before automatically adding someone into the mix. She has told us she will tell us if she needs help or if he needs a therapist in class. We trust her on this.
What we are going to do, in spite of the cost, is talk with the SLP who evaluated him about weekly therapy. Due to the generosity of Peter's parents who have put money aside for any special needs therapy that Bobby may need as well as a savings account that we have for Bobby and Maya's education, we are going to seek out private speech services. The SLP recommended twice a week and we're going to try and work out some sort of situation where I take Bobby to her office, the next town over, so that he can have his therapy without Maya helping him (or feeling slighted that she isnt getting therapy). I think it may also help him grasp the concept of his SLP as a 'teacher' and he may be more open to working with her and learning with her.
And let me not forget to mention yesterday with Bobby... What a day... He was spot on all day. Eye contact was good, he was talkative and demonstrative, and outbursts were minimal. One exchange will be in my head for a while. He told me he was hungry and got in his chair at the table. "Would you like goldfish or a graham cracker?" (typical snacks). Bobby looked at me and said, clearly, "I want ice cream." (with shock) "You want ice cream?" He looked away, at his grandmother who was visiting, then back at me. "Yes. Want ice cream." Still in shock, I got him a cone and put some vanilla ice cream on it. When I gave it to him, he smiled and danced in his chair. "Ice cream!" The delight of being understood was so clear. And the delight of understanding? I cant even begin to describe it.
On Friday, when my dad visited, Bobby went to him and took his hand, wrapping his PawPaw's hand around his own. "Draw," he said. My dad guided Bobby's hand on the drawing board and then just held it while Bobby drew and wrote shapes. They switched hands and afterwards my dad shared with me a few things he'd gleaned from the half hour (yeah... half an hour). He said that Bobby's right hand seemed stiff, as though he was trying to write and draw correctly, while his left hand was completely relaxed although his penmenship stayed the same. From an artistic standpoint, Bobby held his instruments in a more 'correct' and relaxed fashion in his left hand. Keeping this in mind, when it was time for us to do some homeschool worksheets that I do with them daily, instead of modeling with my right hand (I'm a righty) and then trying to work with Bobby on the right (he usually has a crayon in both hands and we've tried to go with whatever hand is closest to the paper but realize we've been falling back on the right), I modeled with my left and then delicately held his left hand. This exercise normally leaves us both frustrated and it can take 15 minutes to do one worksheet (we're talking drawing a line or two from point A to point B or tracing shapes) because, once I've started, we're doing the damn worksheet. This time? It still wasnt a Maya experience of "I DO IT MYSELF!!!!", but it was a ton easier. I kept my hand on his and explained what we were going to do, but he did it. And boy was his left hand more relaxed! Is he left hand dominate in writing and drawing? Quite possibly. And no wonder he hated doing his worksheets with his right hand if that is the case. Writing with my left hand is a stiff, unfun experience. With my Irish temper, it's no wonder he was ticked off every time it was his turn. (That being said, he still wants to do things on his time table and isnt thrilled when I tell him he's going to do worksheets, read, etc, but hey kiddo, life is life. We all do things we dont like or when we dont want to do them.)
A dear friend put me in touch with a mom who has a son with Aspberger's Syndrome, as a means of reaching out and getting a point of view of a Spectrum mom. One of the things she said was that she often sees parents who describe themselves as desperate and that I didnt come across as though I felt like our home was desperate.
We arent. Part of me feels bad complaining because we're lucky. We've got great kids and a great family and a great household. I am so blessed. We struggle, but everyone struggles. The greatest lie we tell ourselves is that life is supposed to be without struggle (followed by the lie that life should be fair). The one thing that we miss is that life is perfect- perfect for us as we live it. Any other life wouldnt be ours. It's not easy, it's not convenient, but regardless of how pissed off you may be, it's going to happen. And if you arent in the mix, it's going to happen all around you. With or without you taking a stance and making a difference.
I said it before- my son is perfect. That's the only label he needs. At this point, I know a lot about him- I know that he struggles to communicate functionally, I know that he has his mama's bad temper, I know that he is bright and smart and kicks me in the teeth with some of the amazing stuff he comes up with. And I know that I have a hell of a lot more to learn about him. There's an infinitesimal amount that I dont know about him. I dont know if he meets the requirements for PDD-NOS or if he will always struggle to communicate. And I dont care. Not about the label. I care about advocating for what he needs to make his mark on the world until he can advocate for himself. I care about getting him the services he needs to make sure that he can tell the universe all the brilliant things that run though his mind. And I care about learning all I can about every quirk and gift he's got going on so that I can help him learn the world around him.
I care about the same things with and for Maya. And for Peter. And for all the people I love.
I write music from time to time. Many years ago, I wrote a piece that, a few days ago, drifted back into my head and it keeps playing over and over again in my mind. You are me and I am you, and we make the world a beautiful place. Every being lovely. Every thing complete. All just the way it should be. The light is changed by the reflector just as I am seen differently by you. We are all unique in our reflection... It goes on, but it is that last little bit. The light is changed by the reflector and we are all unique in our reflection of That Which Is. I've never wished for Bobby or Maya to be anyone other than who they are because for a long time, I just wanted to be someone other than who I am. How much harder accepting me would have been if my mom had said "Why couldnt you be like X"... Funny enough, I dont even think she ever even wished that. She may have shaken her head at times or prayed for the strength not to strangle me, but if I had to point to someone who has stood behind me and cheered for me to find my own way, even when that meant stumbling and getting up bloody and with a tearstained face, it's that woman.
We're going to get there, wherever the elusive there is. The road- it's going to be bumpy. There may be tears or screams (yeah, probably both). I may blog here twice a day or twice a year (okay, I wont be that awful), but this space is a part of my journey too, and from the depths of my soul, thank you thank you for choosing to be a part of the walk with me and giving me your own stories to sustain me (or to just throw me back into reality).
(And, on a housekeeping note, I'm being overrun in new tech over here. The laptop and phone that I got while on bedrest with Bobby and Maya are on their way out. My new phone is here and I'm trying to learn it but the 'smart phone' is a smartass and smarter than me so we are having a sort of fifty shades style relationship together. If you call, I may hang up on you- by accident of course!- but eventually, I will get this thing under my control!!! The new laptop is here as well, but Peter is still setting it up for me. If you know me in real life, you know that my skills lie in the Domestic Goddess realm, which is about as far from the technologically saavy realm as Donna-Reed-On-Crack gets.)