Susan's Blog

Tuesday, May 27, 2008

Being Okay

It is time.
–Rafiqi, from The Lion King

Nat’s IEP this morning. Oh, God. The goals this time are to be not only what he does during the school day, but what he does in the Residences. I am also bringing a document regarding the guardianship. It is the formal disclosure to Nat about what is going on. In essence, a neutral person must read to him the plan for our guardianship. I think his teacher could do this, being a dear and sensitive person. “A lot going on!” as my mother would say.

I am afraid I am going to be very emotional, either during or after this meeting. I have so many feelings about it: eagerness to formulate really good goals; nervousness about the un-anticipated, the surprises; relief to get this discussion going; and of course, such bittersweet pangs. But I also feel like I’ll be okay.

While I was riding my favorite bike ride on Sunday, the song Melissa came onto my shuffle (I ride with one ear bud in and sing while I ride). Melissa, by the Allmans — that powerful brotherly duo before the peach truck ended Dwayne’s life — is the song that I most connect to Nat. It is the song that was on my Labor Tape, which Laura and I made together as part of my birth plan for Baby #1. Of course we never used the Labor Tape, but I played it a lot in my car while waiting for that baby of mine to arrive. I didn’t know I was having a boy, even though he had shown himself to me in a dream. I was always reluctant to read the signs, way back then, to trust my intuition. Anyway, I thought that if it was a girl, I would name her Melissa. I was so eager to have this baby, and I would express this impatience to my Grandma, who would always say, “In a gutte shu (?) (It will happen when the time is right).”

The beautiful opening strummed chords of Melissa came on, and I did not push the button to skip it, as I often do these days when I want to stay pumped. Instead I plunged into the treacle; I got sucked into the sweetness of sadness indulged and wallowed while the endorphins and adrenaline worked against this and kept me going. I listened to the words and let all those powerful feelings descend. “Crossroads — will you ever let him go?” And it came to me that we really do have to let our children go, as people are always telling me. It’s like we are given these beautiful souls to take care of for a brief time (that seems endless when they’re young) and we nourish them and learn from them, and they from us, and then they go on their way.

So I suddenly felt like, yes, it is okay to let Nat go. It is time. To let him move out, even though that is not necessarily his plan right now, and give him the opportunity to grow and learn among others. To live his own life apart from me. And then, to come back and visit and reconnect in new and unknown ways.

As I always tell Ben, when he is scared to try something new that I know will help him: It will be okay. This is what I knew, at last, as I pedaled home.


I think too the feeling is magnified with our special needs children…like no one understands or could possibly care for them the way we do. My oldest lives in NYC, we are in Florida and I am so ok with that. Even when he moved away at was a pretty easy transition…he was sooo ready. I swear I have more anxiety dropping off my little Deej (ASD) at special ed pre-k each day….almost like I can’t breathe or something. Anyway, when your younger boys “leave” home, I think it will be much easier on you. BTW we live in Daytona, where the Allmans grew up…a little trivia for you!

— added by Eileen on Tuesday, May 27, 2008 at 8:37 am

Good luck today Susan, and I will use your words that you use with your son when it comes to fear. If they can help you with such a huge decision, then they certainly could help me to realize that putting my son in regular ed is probably the right, but most frightening thing I’ve ever done. I hope your son blossoms in his new enviorment and look forward to hearing all the great news about him in your blog!

— added by Bonnie on Tuesday, May 27, 2008 at 9:48 am

I was out in the yard yesterday with the kids. They were running through the sprinkler and having a blast. It was so cool to see them interacting with each other. Amy tries so hard, but Jack generally rebuffs. Not yesterday. So I took it all in, humming The Allman Bros song Blue Sky in my head…

When you wrote today about Sweet Melissa and the place you are, so very far ahead of us, I felt so connected. I am not a churchgoer really, but I prayed for you. Prayed for Nat.

I know this will be hard. But you’re right. It will be okay.

Thank you for being who you are and sharing it so honestly through your writing.

It helps. It really does…

— added by Judith U. on Tuesday, May 27, 2008 at 10:30 am

Good luck to all of you today Susan.

— added by Someone Said on Tuesday, May 27, 2008 at 12:02 pm

Susan, lovely post. Nat needs this kind of growth, all our kids do. As excrutiating as that is, it is just that simple. We can rale against it all we want, but greater independence makes them stronger, neurotypical or not.

My husband’s 55 year old sister has lived with her parents her entire life. She has a litany of issues that I won’t detail, but suffice to say she needs support. She lost her mother two years ago and now she and my 87 year-old father-in-law are plotting to return to MA from the eastern shore of VA. She is 55 and will be living separately from her family for really the first time. Can you imagine how difficult that transition will be?

Wishing you strength and peace for today and the coming months. Lisa

PS: Jared has been off his meds for one week and we are pleased to report no contusions/fractures for anyone at this time. Sense of humor is still in check, we will continue our study.

— added by Anonymous on Tuesday, May 27, 2008 at 12:40 pm

Looks like an interesting book.

Families of Adults with Autism
Stories and Advice for the Next Generation
Edited by Jane Johnson and Anne Van Rensselaer
Foreword by Stephen Edelson, Autism Research Institute, San Diego
Paperback, ISBN: 978-1-84310-885-6, 192pp, 2008, £13.99, $19.95


description contents
Families of Adults with Autism is a collection of real-life stories of people on the autism spectrum growing up, as told by their parents and siblings.

The individual accounts explore the challenges that families of people with autism have faced, and the techniques they have used to improve the quality of their children’s lives, from mega-doses of vitamins and dietary changes to intensive interaction. The contributors also relate how they have worked with their children or siblings to help them to function at their highest possible level, be it showing an awareness of their environment, holding down a full-time job in a local store, competing in the Special Olympics, or achieving international recognition as an artist.

This book will offer practical and heartwarming advice to families who are affected by autism spectrum disorders, and provide insights for professionals working with people with ASDs.

— added by Anonymous on Tuesday, May 27, 2008 at 12:55 pm

Yes, it does! But please, for the future, I don’t like to post anonymous recommendations because I don’t want to be in the position of running ads for potential PR people, rather than genuine readers!

— added by Susan Senator on Tuesday, May 27, 2008 at 1:03 pm

Susan, I hope things went well with the IEP. I know it must be a difficult transition no matter how smoothly things go. Just thinking of you and sending warm thoughts.

— added by Niksmom on Tuesday, May 27, 2008 at 1:08 pm

Susan, I named my daughter “Melissa” after that same song…I guess we have similar tastes in names and music. I also wanted to add that I hope you can try to look at this transition with Nat as just a different living arrangement. He will still be in your life, and you can still talk to him, hug him, and see him. He’s only going to be living in a different home setting. Your post was excellent, and helped me to look positively with strength towards the time when my son will be doing the same thing. Thank you.

— added by Candy on Tuesday, May 27, 2008 at 11:09 pm

I feel for you, my friend. Letting go is never easy. And yet, while I deeply feel your anxiety and fear, I also envy you and Nat the opportunities to grow and become his own separate person. In my country, there are no opportunities and facilities, private or government-funded,to help our adolescent children with autism transition into the world. Some moms and I are talking about putting up our own “house” to prepare for this transition. It’s going to be a lot of hard work, but at any time I fear jumping into the unknown, I only have to draw inspiration from your courage.

Blessings today and everyday!

— added by Kittymama on Tuesday, May 27, 2008 at 11:10 pm

Aw, Susan. Big hugs to you and Natty. Been a long time since I’ve read your blog, my computer ate all my bookmarks. :p

At any rate, what a process this has been for your whole family! I wish you peace.

— added by ASDmomNC on Wednesday, May 28, 2008 at 2:53 pm