Susan's Blog

Tuesday, September 11, 2007

Dream Off

Before falling asleep Ned and I talked more about Nat. Ned is resisting my basement apartment idea and also the idea of him living at his school. I found myself thinking, “Ned’s not ready to get to this next phase.” I kept checking in with my heart, searching for the pain, like you do with your tongue in your mouth when you have sore there. Yup, it was there. But mostly there was this dullness, this vague uncomfortable feeling which I now think was fear. If I let him go, will it be a mistake?

I fell asleep, and dreamed that I was at a vacation resort somewhere. My mother was there, too, but she was very small, and also disturbed, it turned out. As I entered the room, she shot at me. Reverberating through my head were the following words, from a (helpful) comment from yesterday’s blog post, “Your third grader deserves his place in the sun, after all Nat had his turn, right?” I woke up screaming.

I got up and walked around to clear that horror away. It came to me that in the dream I may have been Nat, and my mother was me. I kept hearing those words, but then imagining the fear of the gun on me. As I’ve said before, I don’t feel old enough to be a mother, let alone a mother with such issues to wrestle with. I know in my head one thing, but in my heart I fear abandoning him. I fear (probably irrationally) that giving him over to the care of others will feel like abandonment to him. I cannot bear that. Neither can Ned, I know it. We are one in this. We are not ready for that kind of change. We want things to get better here, that’s all. Even though I have seen what a marvelous job most of his teachers have done, over the years, that fear remains, a black mildewed presence at the bottom of my heart.


Susan, I believe that life is not easy for brothers and sisters of kids with autism. My Jon and Rachel have been impacted by Charlie’s autism. But that’s life. I can’t change that and I won’t take Charlie out of their lives. In a very real way, I believe that their lives are made better, richer and more meaningful because they do have a brother with a disability. They are learning to be people who can deal with pretty much anything.

Sure it is hard on them sometimes, but this is life and it’s what we are given. I don’t think that your idea of having Nat at home is a bad one at all. I heartily dislike the idea of residential placement for people with autism mainly because it seems like in this world, all they have is this family that they love, that they have opened up to. Take that away and you take away so much. That is my thought on the subject. I think you are right to plan a home for him with you. Ned will have to sort out his own feelings, I am sure that together you will both find a way, you have a lot of love and brainpower together.

Mostly, I think that you are not cheating Ben. You can’t let Nat abuse Ben, but it doesn’t sound like that’s the case. It’s hard being the youngest, Ben will have some issues, but I think that if he felt like he was the one responsible for sending Nat away, he would carry that always.

I am hoping and praying that this works out for you all, take care and try not to let it overwhelm you.

— added by Mom on Tuesday, September 11, 2007 at 8:56 am

I am so sorry that my comment gave you nightmares. I had been sitting on my hands refraining from talk of residential services and shall not write of such things again.

— added by Anonymous on Tuesday, September 11, 2007 at 8:57 am

Oh, Anonymous, please don’t feel chastised in any way! I really appreciated your wisdom on this. When I write, though, I write about all the sides of the truth that I can see, and I could not ignore that side of things. You were right to express yourself, especially in light of your positive experience!!

Jan — Bless you.

— added by Susan Senator on Tuesday, September 11, 2007 at 9:00 am

Susan, I wanted to comment on yesterday’s post but had no words of wisdom or comfort —being in my own suckhole on the opposite end of the age spectrum with Nik. But I want you to know that your sharing this struggle in such a public way is a gift to many.

I don’t have any clue what you must be going through but I do know that you and Ned are strong together. Your home, in spite of what it may feel like in given moments, is full of love and acceptance and nurturing. It may be messy along the way but I have faith that you and Ned will ultimately find a solution which honors all your children and your vision for your family.

Keeping you in my heart as I go through the day…xo

— added by Niksmom on Tuesday, September 11, 2007 at 9:15 am

Oh Susan! The sibling thing is so hard! My Julian says almost daily that he hates Max and that his life is ruined by having a big brother with autism! I can’t blame him. The day before school began, the boys were in the playground outside the school. They had had a good time at the teacher-student-meet-and-greet thing, and were anxious to have their first full day at their new school. Suddenly, Max disappeared from the playground. Teachers and staff were inside the school, preparing for the first day and reported having seen a big kid loping down the hall on the third floor, asking for his dad. We combed the school, but didn’t find Max. He arrived back at school in a police car about 10 minutes later. He had decided to sit in someone’s unlocked car. Julian and Sam were MORTIFIED! All the teachers, the principal, etc. were in on our family drama. Julian deserved to just be a normal new kid on the first day of school, and, as you can imagine, resents the hell out of Max for this. Since Sam is also attending the school, and also has “issues” relating to his Asperger Syndrome, my 9 year old Julian is really caught in the middle! As parents, Rob and I can only do so much to assure that none of the three feels like he got a bum deal in life. My heart goes out to you and your family! I’ve always wanted to keep Max home with us — forever, if that were possible — and more and more often, that seems unfeasible. Max is huge, volatile, and unpredictable, and he is only 10 years old! I can only imagine how agonizing it is planning for a transition to adulthood and the greater independence that comes with it! We Peacocks admire you guys so much as you face these issues — your bravery inspires us every day! – TPeacock

— added by Anonymous on Tuesday, September 11, 2007 at 10:39 am

My thoughts are with you. Such a hard place to be in. And it is clear that you love all of your boys so much.

— added by Drama Mama on Tuesday, September 11, 2007 at 10:40 am

Oh, Susan. My heart just aches for you. When I think of the future for my son, and think of possibly having to make choices like this, it makes me have a panic attack. I totally get the fear and feelings you’re having, but have absolutely no sage advice or words of comfort for you. Whatever you decide to do, it will be the right, loving decision for you, for Nat, and for your family.

— added by ASDmomNC on Tuesday, September 11, 2007 at 10:48 am

One positive thing in your corner is living in Massachusetts. You, Nat rather, will have options. In Louisiana, the Mojave of special needs services, there are very few options for residential care.

The one thing that scares me about having my son live in the family home until his father and I pass on, is how terrifying would it be for him to transition to other caregivers as an adult in his 30’s or 40’s?

This is one of the reasons I was so excited for Nat to spend a week at camp. Building on that experience should give you all more confidence.

I have a friend whose daughter is a resident at the New England Center with great success. The child (who’s 15) comes home on weekends and goes out to dinner with family once a week.

You did just the right thing with Ben. Everybody plays the cards they are dealt, Ben has a brother who can be a pain in the patoot (and what brother isn’t?), but that doesn’t give him license to be cruel. I know its a long way away, but maybe sleep away camp would benefit Ben, and give him the chance to miss his brother and to not be identified as the kid with the nutty family.

Hang tough, you and Ned will figure out what’s best for all your boys.

— added by Lisa on Tuesday, September 11, 2007 at 5:33 pm

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