Susan's Blog

Thursday, April 27, 2017

Little Red Motherhood

Nature is red in tooth and claw. — Alfred, Lord Tennyson

Mothers are even more. — Me

Still not over it. Nope, so don’t expect that I’ll move on. Or rather, it has morphed into something else. Action. My grief over what happened to Nat — maybe it will always be with me because of the responsibility I bear. Because I failed to keep him safe. Twice. Yes, there was a quieter horror, lower down, in the shadows of an X-ray. There lurked the other, older healed broken rib.

No, it was not my fault, of course not. I would rather die than hurt Nat. Any of my sons. Take the bullet, no question.

We don’t know how it happened — violence or an accident that was then overlooked.

The other day I interviewed a psychologist who has made some inroads into treating trauma in people with communication disorders, people who cannot easily tell someone what happened to them. She was very insistent upon the likelihood that this will happen again. That the numbers of people with disabilities who are abused or traumatized are higher than the non-disabled population. The CDC backs this up indirectly — the research seems to be only about children with disabilities. But if you extrapolate — 1) the disability doesn’t go away, and 2) neither does some degree of vulnerability. Couple that with the low pay and lack of training for adult caregivers — as opposed to special education teachers — and you have a far worse situation.

Emotionally I’m back where I was when Nat was first diagnosed. I am at sea, nothing but my husband to hang onto. He’s a rock, an island of safety but he knows only the other half of what I know. Together we come up with some strategies of how to deal swimmingly with autism but it is in the end shit we made up. Our best idea was the Nat books (I also called them Crisis Stories). You would know them as social stories but I invented the Nat books before I even knew Nat was autistic. 1992. Carol Grey had only just invented hers, in 1990. Anyway, I sure didn’t know about them. That would have meant that I knew Nat had special needs, and I did not. Another failure. I did not stick up for myself, and consequently, for Nat. I knew something was going on with him but I did not push the doctor. Anyway I think the Nat books are better because there are actual photos cut up to fit Nat’s needs — not stick figures. (Stick figures are abstract; how would that work at all with my concrete thinker son?) And the sentences are simple but not insultingly so. They are written the way I talk to Nat. I wrote a Nat book about his traumatic event from July and he seemed to really be drawn to it. But then he took it with him to the group home and so now I don’t know what he does with it.

Surprisingly, I have not talked to Nat a whole lot about what happened to him. I am afraid to because I don’t know if that’s what he needs. But the other day I tried a new thing: I created a Nat book about rules he should follow. The rules are actually things like the right to not talk, the right to eat what he wants. The necessity to tell me, Dad, or anyone in his caregiving circle when and if he’s been hurt. Or if he’s sick. I spell out that no one may touch Nat on the penis or tush. I have to do it that way to be absolutely sure he knows what is what. No one may hurt Nat.

I also put in that Nat has the right to live where he wants. And ever since his injuries, he has made it clear that although he likes his group home, he would prefer to sleep and eat at our house. I take that very seriously.

Although — I have to add — that Ned is not convinced this is true. Ned thinks if we put things on the calendar he will prefer what’s on the calendar, whether it’s to sleep here or not. This may be true.

I am beyond relieved that he is happy living at his group home for some of the week. But I cannot just ignore the fact that he wants to be with us more than them. Anytime he’s given the choice of where to be, it’s our house. [Although like I said, this may only be because of how we offer the choice.] Nothing to do with the amazing manager there, the warm staff. The staff is frankly wonderful, on top of everything, they make and keep schedules, they smile, you know…

But I have decided that this is what must happen, someday, maybe soon:  My future will eventually be wrapped up with housing him, keeping him not far from my wing. Not keeping him in a bubble, but a nest right below my nest, same tree. In giving birth to my boys I did not realize that I was entering into an irrevocable contract. I was to nourish them, nurture them, educate them and help them grow up into wonderful capable adults. Then stand back and let them do it.

But if they cannot at some point, I will be there for them. And right now, Nat cannot do it. I now see that. He will always need my protection. And so he must have it. This is an axiom in my life, as true as I need to breathe oxygen and I have found my soulmate in Ned. The truth is that if my sons need me, then I will drop everything to help them. Right now, at this point in his development, Nat needs me, and needs to live at least part-time with me.

Ned and I are now looking into selling our glorious home and buying a two family with the downstairs apartment for Nat, a friend, and a caregiver. Tying up all our assets in that. Not a green golf course pied a terre in New York retirement.

Too fucking bad. This is my path. My children. This is how I feel I can keep him safer. It may not even have rational truth to it, but it is what I feel I have to do. It’s not a beautiful declaration of pure white love, it’s not some noble thing. It just is. A raw and heavy truth, with piercing claws. I’d have to rip my heart to get them out.

Nope, not a saint. Just a mother.




That sounds like a wonderful idea. It makes you feel better as well as Nat. Just make sure you can garden and ride your bike, with and without Nat.

— added by Donna Baker on Thursday, April 27, 2017 at 3:01 pm

Oh, absolutely! 🙂

— added by Susan Senator on Thursday, April 27, 2017 at 3:02 pm

One of Cami’s first pleasures was drinking bubbles. They were poured into pretty glasses which, when we glanced away, were guzzled down before we knew. Before we knew that after 25 years we would be listening to the same WEESING songs and doing the same bedtime routine we established before she was 3. She loved “mommy’s juice” and anyone’s who happened to be making a toast, to what didn’t matter. A bubble is where we’ve been except for the times her eyes flutter awake when she’s on a stretcher in an ambulance or hooked up to an IV in a hospital bed.

All those “why didn’t we see it’s”, we could have avoided… and as her mom and mom to 2 others beautiful daughters I cannot imagine a life anywhere with anyone without Cami

— added by Ellie Belknap on Thursday, April 27, 2017 at 4:38 pm

So touching to read your writings. You are a strong and beautiful woman inside and out.

— added by Norma J Feldman on Thursday, April 27, 2017 at 5:23 pm

I have a friend who did exactly what you’re talking about for her 25-year old, and it’s working very well! He still has independence (with caregivers) yet he can be near them. They relocated to make that happen as well.

— added by Lisa Reeves on Thursday, April 27, 2017 at 6:03 pm

Thanks, Lisa!

— added by Susan Senator on Thursday, April 27, 2017 at 6:04 pm

I think this is a wonderful idea and would work well for so many parents/caregivers and the adult on the spectrum. When you get a chance could you write about how Nat’s housing portion is funded when in a living situation like this (within a two family house owned by parents). Would the funding still be the same as when he was living in the apartment with his old caregiver? Grateful for this info. as I think this is so ideal when parents can do it.

So happy for Nat and I think he will be very happy and content and feel very secure knowing you are nearby.

— added by wonderful! on Thursday, April 27, 2017 at 6:38 pm

I wish I had some awe inspiring words to bring you comfort but I come up short. Never would I ever infer you “get over” anything. Anyone who suggests that is flat wrong. You’re his mother for heaven’s sake! Only natural for you to grieve and feel anger and anything else and there is no time allowance.

The thing that makes autism so different from everything else is it is NEVER one size fits all. It is so different and so individual. If Nattie is comfy in your (his) home (for now) that is where he shall stay. And, next week you will be writing about a new place you have discovered and Nat getting anxious to go. That’s just typical life in autism world.

— added by Sharon Jones on Thursday, April 27, 2017 at 7:02 pm


— added by Susan Senator on Thursday, April 27, 2017 at 7:24 pm

You are an amazing mother and advocate. I read your first book twelve years ago when my son was just diagnosed. To date, the hardest book I have ever read. Spot on, honest and sobering. You have paved the way, guided me and so many others. I am so sorry that you and your family are going thru this hell.

— added by Kristan on Thursday, April 27, 2017 at 8:55 pm

Thanks, my lovely cousin!

— added by Susan Senator on Thursday, April 27, 2017 at 8:56 pm

One thing in Georgia that is flawed with the Medicaid Waiver for group Home living is that we bill for 344 days per year. If a resident is out of the house we have an empty bed and cannot bill. I have had parents in the past that want to take their adult Individual out on home visits over night frequently so they offer to pay the daily rate in order for the group home owner to keep their bed available. Otherwise they will discharge the person because they can’t afford to have an empty bed.
This is so wrong!!!! The waiver should pay for the bed to be available whether they choose to be home that evening or not! It’s their choice! It’s their home. This is just so damn stupid to me! What if a person wants to spend the night with a friend? Oh, sorry you can’t go, you’ve already been out of the home for 2 days this month. And that’s your limit because we can’t afford for you to be gone.
I know of one parent that wanted to take their son on a 3 week vacation out of the country, they paid the owner for 3 weeks worth of billing. They didn’t have to but parents have this fear that their loved one will be replaced if the group home can’t bill the full amount, so they pay it.
I have even seen at another company where an Individual was hospitalized for 2 months and then once they are discharged from the hospital they find out that they are going into temporary placement until a new group home can be found because their room has been taken by a new resident.I do see both sides of the coin on this one as far as the provider can’t control what Medicaid will and will not pay for and they have to pay the bills and keep the house running. It’s just another example of our Individuals suffering the consequences of some dumb ass behind a desk writing policy that has no idea what it’s like to be a disabled person!!
They won’t pay a provider while an Individual is in the hospital, REALLY???!! Like you don’t have to have a home to come home to when you leave the hospital.
This makes me mad!!!!
Be careful Susan that this never happens to Nat because he’s spending half of his time out of the group home. They may not keep him if they can’t bill. Might be fine for a while, and then the next thing you know, you’re getting the “We can’t afford this anymore speech.”
Hopefully in your state it is different, I don’t know. Other parents beware!! Happens all the time in my state.

— added by Win on Friday, April 28, 2017 at 10:16 am

@Win…read Shelly Raly’s Mighty Ivy facebook (her daughter has Rett Syndrome and she is from Georgia) regarding Medicaid and what a bunch of con artists you have for politicians surrounding the Medicaid issue. She spoke about this not long ago. I think Mass. is a bit more advanced in this area.

— added by wonderful! on Friday, April 28, 2017 at 11:56 am

I’m so sorry you have all had to go through this, especially Nat. I learn so much every time I read your posts, and I thank you for that. Nat deserves what’s best for him and I know you will move mountains to get that for him.

— added by kim mccafferty on Wednesday, May 3, 2017 at 11:52 am

%d bloggers like this: