Susan's Blog

Monday, September 12, 2016

If I Were a Good Mother

If I were a good mother, I’d read to Nat every day, on the chance that it would spark something and he would eventually read to himself. Or maybe it would make him want to talk. But I sit here, sleepy and addicted to my own book, comfortable in the big armchair. Nat seems happy in his room. Didn’t I hear him laughing up there? Fake laughter, but still. Something he enjoys.

If I were a good mother, I’d go upstairs and engage him so that he is redirected from fake laughter.

If I were a good mother, I’d have Nat make his own lunch. I would start with small steps. Choose your snack. Get a baggie. Eventually he would find the entree. Let me know when we needed to buy more. But that’s a stretch. He could do the snack, the baggie. He’d find an entree. He already can do that. But letting me know when we needed to buy more? That’s a whole new set of skills. That’s a leap that autism jumps up and blocks.

If I were a good mother, I’d type with him on Facebook. I would force us to wait for the words to catch, for his attention, his comprehension, to spark. For his fingers to type.  But haven’t I done that? He struggles so much with reading the posts, with understanding what was said, what is expected of him. He does not understand what comes after someone talks to him. Only what he has been directly taught. I ask him what is on his mind, what does he want to say, and he types our names. The five of us.

If I were a good mother, I’d feel happy with that.

If I were a good mother, I’d have signed him up for therapeutic horseback years ago, not just now that I found out he liked horses at camp. But I remember, so long ago, the two places that offered it were full. Waiting lists for years. They were also located 50 minutes away. Also, how do you pay for them? You have to call your insurance? That’s the worst thing next to car repairs and taxes.

If I were a good mother, I would have researched that program everyone talks about, in Merrimac, an hour away. Such good things about it. Horses, shared living, everything. But I don’t want him to live that far away. And I don’t want to discover that once again, everyone was a little wrong. Nothing’s perfect, but I never stop feeling like it is at first.

If I were a good mother, I would research maybe five programs before choosing where he is. But I stop because it is so tiring to go, to tour, to explain who Nat is, to watch them try to understand him themselves, to include him. It’s boring. It’s sad.

If I were a good mother, I would have realized he was unhappy for a reason. Losing weight for a reason. Holding his body stiff for a reason. I wouldn’t have stopped at a psychiatric solution. I would have insisted on an investigation. And back when we thought he had pain somewhere on his lower right side, I would have pushed the ER doctors to do an x-ray. We would have probably found out way back then that something was very wrong either in his apartment life or his workplace or his program.

If I were a good mother, I would know how to parent Nat and I would have the endless energy and wisdom to follow through.




Oh, Susan, Amen amen and amen. I understand this on a cellular level. Ouch and thank you.

— added by Kate on Monday, September 12, 2016 at 9:47 pm

The good mother loves her son. I don’t mean in a sentimental way. You truly love Nat in an active way. He knows it. It’s not the easy kind of love. It’s the hard kind. The kind that always requires you to search for strength and wisdom. And because you search, you find it and share it with everyone you touch. What you are talking about is a perfect mother. Does she exist? I’m sure Nat knows you’re a good mother. I’m sure your entire family know you’re a good mother. Why don’t you? Have you forgotten?

— added by lisa clements on Monday, September 12, 2016 at 10:35 pm

“And a sword shall pierce your heart too.”

The sorrow is deep and that is what makes you a good mother.

As a good mother, there is always only so much we can do for any of our children.

I join you in the feelings you have of feeling guilty for not pursuing something for the reason that it may help, but then knowing that the glimmer of hope the situation promises is empty, and when you find that out, you’d wish you didn’t pursue it.

— added by Susan Anderson on Tuesday, September 13, 2016 at 4:42 am

If I were a good a mother, Ashley would have friends, a better haircut and her new hearing aides (they are suspended in an insurance abyss). The piles of paperwork would be neatly filed and checked off as ‘done and done!’

If I were a good mother I’d be more like Michaela Odone (Lorenzo’s oil) not the out-of-shape, exhausted mother, who only gets to the top three of the daily top-ten on the list of Ashley’s needs.

If I were a good a mother I’d have a life of my own.
I’d take a class, go to the gym, and socialize with friends who don’t have a child with special needs.

I belong to the same club as mothers like you… wishing we were better. Some days… regretting choices or lack there of and knowing our kids deserve, way more than we have been able to deliver.

But that is only some days…
Love you…

— added by Lauri Medeiros on Tuesday, September 13, 2016 at 6:25 am

Everyday I think what I’m not doing.
Ben wants a picture drawn, but there’s dinner to make.
Ben wants to sit in the food court forever…. but I’m ready to go home and have a cup of coffee.
Ben wants/needs/should…..
I want/need/should……


I good mother knows her success and failures and everyday tries again.

— added by Jacquie on Tuesday, September 13, 2016 at 7:43 am

Oh, my goodness. I have a lot of these voices in my head, too. If I did better, my Bink would be able to shampoo herself by now, or make a meal by herself, or wipe her butt better. Sometimes, those voices get reinforcement from other people’s voices. But you know. You know you are human, and doing your best. Sometimes it is exhausting and frustrating and sooo repetitive ( read boring) and sad and it just stretches out so endlessly. It just goes with this territory, and nobody who isn’t in your exact shoes can know what it feels like. But many who are in similar shoes do have a sense, and we all go through this stuff , and at least you, we (?) have a community of people all struggling with this murky tangled stuff. The injuries? You didn’t know, and now you do. And by being public about what happened you are raising MUCH awareness, and that can only help all of us. Going forward you are more aware, and we all are, and we are all right there with you cheering for a world that is decent and kind and has real choices that provide safety and dignity and joy and meaning for our well-loved adult kids. For today, be gentle with yourself!

— added by Melinda on Tuesday, September 13, 2016 at 8:04 am

Just change the details and this is a conversation I have in my head at least three times a week. Beautifully expressed as always. Despite all the doubts, I believe both our boys truly know they’re loved.

— added by kim mccafferty on Tuesday, September 13, 2016 at 1:53 pm

No! No Susan I reject all of your statements in this blog. I understand feeling like you could always do more but you are a good mother. You spend a lot of time (I’d venture to say most of your time) advocating and caring for him. What happened to Nat was not your fault. It was not of your hand. I’ve been reading your blog and your books for years. You didn’t go into his home placement lightly it was carefully thought out. All of his placements were decisions you took seriously.

Some things are, sadly, out of your control. Out of our control as parents. It is easy to look back and see the signs now. It was not obvious before. Also, your husband was right along side there with you are you putting equal blame on him? It would be 50% his fault. I’m betting your not. Please don’t beat yourself up over this. I’m so sorry it happened to Nat and to your family. The person(s) responsible should be punished. I pray that you, Nat, and your family will be able to recover from this and move on.

— added by Diana Romeo on Tuesday, September 13, 2016 at 3:54 pm