I stooped low and picked the CD up from the floor. I was about to toss it onto the table with the other endless piles of crap my kids come across when I saw a familiar flash of color and decided instead to flip the disk over in my hands. I smiled when I saw it was still in pretty good shape despite Damien using it as a chew toy. Bob Dylan it said. I hadn’t seen the disk in years, and suddenly here it was.
Praise all the Jesuses.
Music is a pacifier of sorts for me. Lord knows that lately I could use some pacifyin’, and the familiar melodies remind me of better days and allow me to escape the negative record player of my inner voice, which is a good thing since my inner voice is a bit of an asshole. Listening to music distracts me from the negatives long enough that I can start to feel happy again, long enough that I can start to feel hopeful again.
While we are getting a lot of support for Xander, he is still losing skills. There are no words to describe the feeling of watching your child regress into a shadow of his former self. We are on month 5 of waiting for the official Autism diagnosis and I am trying to keep up hope. Trying to tell myself that we are going to be okay, that we are doing everything right for Xander, and that this diagnosis is going to help us to raise him into the very best child he can be. Hope is what has kept us going.
But you know what? Hope is a fickle bitch.
I don’t know how it happened, but as the months flew past I failed to notice Damien’s development.
He’s not getting more than 8 hours of sleep in a 24 hour period. He is not speaking at all. He is constantly screaming. And when I add up all of the little things, my brain screams at me…
He is just like his brother.
After 15 months of not sleeping I finally had enough clarity to take Damien to the Doc this morning to talk about my concerns. The verdict so far is that he is fine physically, and is showing more “good” signs than negative signs. 15 months is still too young for me to be worrying about him. Doc says we need to give it time. Just keep moving forward, love him as best as we can, and just keep watching him.
Watching and waiting have become the only constants in my life. Sometimes I wish I could run away, just for a little while, to be me again. I don’t care if it sounds selfish. I love my kids until I fear my bones will break from the stress of it all and some days I wonder if I am just getting too old for it.
So while hope may be fleeting, music is always here to offer me a small respite. In my near-daily sleep deprived state I find certain phrases echoing through my mind, sometimes making me smile, sometimes making me cry, but always bringing me comfort.
Then take me disappearin’ through the smoke rings of my mind
Down the foggy ruins of time, far past the frozen leaves
The haunted, frightened trees, out to the windy beach
Far from the twisted reach of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea, circled by the circus sands
With all memory and fate driven deep beneath the waves
Let me forget about today until tomorrow.
Yes, Mr. Dylan. Far from the twisted reach of crazy sorrow is where I want to be.
And one day I will be there, far away from this uncertainty and chaos and in a place where hope isn’t quite so fleeting.
A place where my kids are happy and accepted.
And hopefully I’ll still have this Bob Dylan CD.
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This week I am linking up with the lovely folks at Yeah Write again. I love them. Things are shifting and changing for the better over there, so pop by and read some kick ass blogs from writers who blog and bloggers who write.
For those of you who are new to my blog, you can find more information about Xander by clicking the tab at the top of the page here if you would like to know more. He has his very own page, the fancy boy!
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oh MAMA! huge huge HUGE hugs to you.
<3
Thanks Christina. It is what it is, right?
Oh shit. I don’t know why doctors insist you can’t tell anything at fifteen months (they do, though). Keep taking him back, and keep asking questions. They always treat the first visit like you’re having a panic attack. But keep going back, and eventually, they’ll take you seriously. I knew from birth that Caroline had autism, and I knew it from nine months old with Sam. Trust your instincts here, no matter what the docs say, and trust the OTs even more. Even if Damien is NOT on the spectrum, you can ask Xander’s OTs for infant exercises. They might also have a list of symptoms to look for that is more comprehensive than what the pediatrician has. Scratch that. They DO have such a list. It’s a beaotch to fill out. I’m sure you’ve completed six or seven of these million page evaluations on Xander, and they have the same questions for Damien. Get your hands on one NOW and start filling it in so you don’t have to wrack your brains when you’re RIGHT nine months from now. You can do the OT exercises with Damien. If he’s not on the spectrum, great, the exercises certainly won’t hurt him, and they may actually help. But trust yourself here, and start gathering evidence. It will make things easier in the long run, even if it causes friction with your MD at first.
One thing that may help with the sleeping is to brush him. Have you been given a really soft brush to brush Xander’s skin with? You can use it on Damien, too. Muscle compressions, too, can help you out. Early intervention is so key, and while you are watching, you can be taking action yourself. It will help you feel less hopeless, less blown in the wind.
And hope, that fickle bitch? I’ve learned not to use that word. It’s an invitation to let down. Instead, I do corny shit like looking for the good in each day, and really forcing myself to find it, because I get negative fast. I won’t stoop to pretending something bad is really good in some obscure way, but I will take very small good things joyfully.
You’ve got the early intervention going for Xander. But it’s only been a few months. It will take awhile to stop the backsliding, and that’s OK. It doesn’t mean that the actions you’re taking aren’t working. It just means they take time to go into effect. And you have a chance to have all those things in place for Damien, should he need them. In the long run, that should bolster your sense of strength, rather than undermining it.
Right now? It’s a great big “oh fuck why?”. But once you get established and dug in, that will turn into “Thank God I started asking questions when I did.”
“Less blown in the wind”. Yes. That.
I will definitely be monitoring D. It’s an odd sort of situation though. I’m still not even sure what I think is “off” about him, just that something is. He’s far behind where Xander was developmentally at this age, but then again Xander ended up losing everything, so comparing them really doesn’t do me any kind of good. On top of that, their personalities are so different. Xan was always so easy going and D just won’t ever stop screaming. Ever.
I love reading your comments Jess, and I am so thankful that you take the time to leave them.
I can’t imagine knowing from birth, and 9 months. Your instinct is something amazing.
I`ll definitely ask our OT, who I absolutely love.
We don`t brush Xander, although I know what you are talking about! Xan has some pretty serious sensory issues so touch has always been difficult for him.
Thanks again for always being so awesome. I can`t even begin to explain how much you’ve helped me since we met!!
Oh, mama… My heart is aching too much these days, but it is aching for you, too. Many, many hugs.
And I think that Jessie has some sage advice.
I have a nephew on the spectrum and I started worrying about him when he was 9 months old, long before his parents or doctor did. You gotta go with your gut, but you know that.
Much love…
Thanks Courtenay, you are so sweet. As always!
There’s just something that clicks inside of you when something isn’t right. It’s amazing what our instinct can tell us, but of course there is still a part of me that wonders if I am being paranoid because we already have one special needs guy.
Thanks for always being there to listen and to share your love!
(Found you on yeahwrite where I lurk and sometimes post)
Hugs! May there be an answer soon, clarity, help, hope. And may music help you through your journey.
Hi Gem! I’m so glad you stopped by. Thank you for your sweet words, you are a doll.
Ugh, what a sucky place to be in.
Hey Gia!
It is what it is, right?
My boys are still lovely and perfect and wonderful, they are just both out to give me a reason to be an alcoholic is all.
Haha.
i’m speechless. hoping (that bitch) and thinking of you and yours and sending hugs and lots of ice cream your way. xo
Thanks Mama! You’re a sweetheart. Ice cream sounds like a GREAT idea.
Good post, tough times… sending warm thoughts your way…
Thanks Brahm. The thoughts help, I mean it.
I Have been thinking of you so much and I saw this post on Facebook but my Facebook wouldn’t load it properly. I can’t imagine what you are going through…your writing brings me close, but I can’t pretend I know what you feel when you look at your babies. I want to offer comfort or a great rousing inspirational story. I hope the desire to means something. This post is incredibly tender and generous. I know you are helping so many people, like me, in ways I am having trouble articulating. Thank you.
Christie, your comment almost made me cry. Happy tears, obviously.
Thank you so, so much.
Hugs. It’s all I’ve got. Hugs, and lots of em.
Hugs have amazing healing properties, don’t they?
Thank you for stopping by, MHAL.
Oh Dawn, you are right to want to drive and drive where nobody needs you (I stole that from Michelle Longo). Take care of yourself with the same ferocity you care and love for those boys. Pot calling the kettle black here, but damn, we ought to do it. xoxo
Cindy, thank you so much.
I will take care of me if you promise to take care of you, okay?
Deal?
xoxo
My son is on the spectrum, too, only he is older now – in the sixth grade. I would love to have a parent nearby with a son in the eighth grade so I could walk with someone beside me who gets it.
I didn’t even know he was on the spectrum until the school failed him and I learned to be a barracuda Mama. I didn’t know you could both be autistic and teach yourself to read at age 4.
This is my first time here. I am grateful I came.
Hi Julie! It’s so nice to meet you!
I have found so much help and peace through my friends online. I have met so many new people with children who have varying developmental delays, and they have been so helpful in guiding me through the next steps.
I sincerely hope that you can find the same! I don’t know anyone with a son in grade 8, but I’m sure there are some to be found.
The spectrum is a wiggly thing. Your son sounds very bright and I can’t wait to learn more about him!
We will be keeping in touch for sure!
Dawn
Follow your instincts. You know your child better than anyone. I always tell families that even though I know a lot about language development, I will never be an expert in their child; they are. That’s why we need to work together.
hugs from paula
I am not a parent yet, but I think it’s safe to say that no one knows your child like you do. So if your instincts tell you something isn’t right, don’t let anyone tell you that you are just being a hysterical mother. I love reading your posts because they are so filled with love and understanding for your children. Take care of yourself, and enjoy all the moments big and small with your precious boys.
So sorry Dawn-Marie. I echo all the comments especially the ones about taking care of yourself. Be that barracuda for your children but take time to rest.
Oh Dawn, I’m so very sorry that you have to now worry about Damien while still in limbo about Xander. It’s so unfair! My heart aches for you. You have a lot of wonderful comments, and Jess’s sage advice. I wish I could help more than just saying I’m thinking of you and your family. I hope you can get some me time – don’t ever think you don’t deserve it! Hugs!!
Thank you for always sharing so honestly. I will keep you and your sons (and their doctors!) in my thoughts and prayers.
I hate it when inner voices are assholes. But I love that you find solace in music, much like I do. Cling tight to what comforts you and know that we’re out here for you. xox
Ah, yes, the soothing power of music. It does the same for me. I don’t know what I would do without it. I am so sorry for all that you are going through right now.
Oh how frustrating! Hang in there. I know how hard it can be to cope with not much sleep. I hope those sleepless nights change for you soon and you are able to get some rest!
Music, writing and exercise have saved my sanity more than once and will do so again.
Hang in there.
I truly can’t imagine what you are going through right now and all I can think of is to send you prayers and hugs. You and your boys will be in my thoughts. I hope you can squeeze in some time and energy for yourself in the coming days and take in at least as much love as you are giving your fortunate boys.
I know a few kids on the spectrum and they are all wonderful, wonderful children with good to contribute to the world. I’m sure your babies are too.
Oh, honey. ((( hugs ))) My heart goes out to you. Take care of yourself! Always make sure your own oxygen mask is secure before securing those of the children traveling with you. Make sure you’re getting all the air you need!
I wish I had something I could say that would help. I’m just sending you tons of hugs and support and strength.
Also, I love Bob Dylan.
I especially enjoyed these last few lines: And one day I will be there, far away from this uncertainty and chaos and in a place where hope isn’t quite so fleeting.
A place where my kids are happy and accepted.
Music is magical. It helps to heal and soothe me too.