Dear Autism Mommy Swami,

Do you think Nat’s aggression/anxiety was worse during puberty? Jeremy just turned 13, and although the aggression has subsided, the anxiety and rigidities seem to have escalated. I’m hoping hormones may be playing a part in this, and that later on (sooner than later I hope) things will level out. I think you are going to be very busy with this new endeavor…bless you, Swami!
-Cookie

Dear Cookie,

Thank you for writing. The way I’m going to answer this one is to tell you all the factors that I believe went into Nat’s behavior when he was aggressive. I do this so that you can think in terms of possible reasons for Jeremy’s aggression, to give you a context to work from. You don’t need to compare your situation to mine; just know that you can use your own observation and empathy skills to try to figure out what’s going on. I say empathy so that it will be easier to remember to stay on his side. My biggest mistake was becoming afraid of Nat and being apart from him. When a child is feeling bad enough to hurt others, it is so important to stay with him. I think of this as “being the adult.” It is very hard, because you’re scared: for him and for others (and you). But try to feel for him, and you will stay connected. Connection is definitely a way out of troubled times.

Nat started to become overly energetic when he was 10, shortly after beginning Paxil. This period also coincided with his starting in a classroom that was not appropriate for him. The teacher was a skittish person and the speech and OT people took Nat’s behavior personally. This was the only experience in Nat’s entire school life where he was disliked by staff. And boy, did he know it. Even now rage simmers angrily inside of me when I remember them. I mention this because we parents always try to pinpoint when difficulties began and why, but what do we really know? My gut tells me that Nat’s synapses were becoming too slippery on the Paxil, making him almost a little manic and definitely uninhibited. But combine that with a tough winter and Blue Meanie teachers… why wouldn’t someone start hitting out at them?

But why did he also hit me? I still don’t know. This period lasted on and off for a year or two, until Nat was settled in a new school program where he stayed until he turned 22. During those years under the care of a wonderful humane doctor we started him on a tiny dose of Resperidone to see if it would calm him a little — not sedate, but calm him, give him a split second of space before responding impulsively. That was the theory. The Resperidone did help somewhat, but also I’m sure we were relieved to have something to try and so we calmed down, too, and that was good for Nat to experience. Can a parent fake calm? I would advise it.

We also started Nat in Special Olympics gymnastics at this time, and this was such a positive experience for him that he really started to feel good again. His coach was lovely and the other kids on the team were his age and some became friends of his to this day.

Winter gave way to spring, and this also helped.

Hormones make anyone crazy, be they adolescent boys or middle-age perimenopausal moms. Indeed, people in general tend to straighten out once their bodies do.

Here is another thing that helped, and you must read this without judging the Swami. Nat’s school had an idea which was to use a time-out room for 1 minute to help him decompress when he became aggressive. This way they could avoid restraining him. It was a small room with a small window. I cried when I signed the consent, but I felt that we should try it and see how he responded.The time-outs were fine for him; he could be alone and away from whatever/whoever had set him off. It served as a cool gust of air in a hot room (I think).

Time-out rooms are not legal these days, but I think that Nat benefited from the quiet separate space for those brief intervals. They were not used as punishments; they were used as a distancing device. I think that’s okay. I think it did him good to experience that he could be calm rather than aggressive.  Would I do it this way, knowing what I do now? Probably not. Now that I know how much he wants to communicate (but on his terms), I would have worked harder trying to teach him words and typing emails.

As Nat grew, so did his language, and I believe that was the element that had the biggest effect on his peace of mind. He could identify what was bothering and he could see that telling us about it had a positive result. This built trust, which is what may also be at the heart of some of the aggression. I think that when Nat would get so worked up that he would hit someone, it was driven by fear of not being validated. I think he felt alone, needing something but not knowing how to tell us. I think this enraged him, at us and at himself.

What I’m trying to tell you, Cookie, is that yes, I think Jeremy will grow out of it the way we all do, and that also there may be some concrete things to try like Special O, maybe meds (under a good doctor’s care), communication skill-building. I think you should trust your gut and your kid, that it definitely will get better and that you both will have learned a lot at the end of this phase.

Love,

Swami

While raising our kids to be able to advocate for themselves, we also need to still advocate for them. That job never ends. In my case, Nat is currently not communicative enough to tell us specifically what he needs in terms of housing, so I have had to use my best judgement.

I don’t think parents realize their own power. I don’t mean power in terms of beating or besting someone; I am talking about the ability to make things happen — the power to fulfill certain dreams. Many of us give up, to one degree or another.  But the thing is, we should not. So many of you come to me with open terror about autism adulthood. While there is reason to be proactive, there is also opportunity to stop and think about what you and your adult child want, and to keep that vision at the front of your mind.

Why is it working so far, in Nat’s house? Staff? Location? Roommates? All of these and one more: the parents are active in making their opinions known. We are not afraid to speak up at the family meetings –once a month, with staff and house manager — and give our input. Our service provider (the organization we chose, licensed by the state, who hires and administers staff, budget, etc.) is open to our ideas and they have organized the house according to our wishes — within reason. If one parent wants to choose or even veto roommates, he cannot. The ultimate placement decisions lie with the state that is providing the funding. Traditionally the state has not wanted to support these parent-input person-centered-planning ventures because they feel that parents get too hot under the collar. They feel it is liable to fall apart. While they are right to be concerned and cautious when giving parents a say, the Department of Developmental Services should also remember that their own state-run homes fall apart, or people withdraw, too.

Parents in our situation only let everyone how they feel, but they cannot expect to get their way, necessarily. Still, the service provider is obligated to factor everything in.

The house manager and service provider staff do listen to us when we talk about how we all want young men who are active and interested in socializing. Being verbal is not required; rather, it is the social willingness we are looking for.  We also want them to be the same basic level of autism and ability, but of course with their own differences, so that they are comfortable with each other but could also learn from one another. We did not want mixed disabilities, mixed ages, or mixed genders. We were thinking about what we would like when living with roommates, or what is typical of guys that age (in their 20′s).  I mention this because sometimes it is an interesting set of possibilities when you mix disabilities, ages, etc. A person with CP, for instance, would bring with him staff for physical care, which gives the house an additional staff person(sometimes). But to us, the abilities would be so divergent it would not make sense.

Our service provider heard us and the young men are well matched. This does not mean there have not been any incidents our outbursts; that goes with the territory of these three young men. But the staff have kept them safe and continue to take them out into the world to do food shopping, runs in the park, trips into Boston, the beach… All the things I wanted for Nat’s from the beginning.

And for once in my life, there have been very few surprises. The parents planned so much with the service provider and each other, that when the guys moved in it felt good, even though there was almost no furniture or food!

Successful adulthood housing arrangements are about putting your thoughts down on paper, fearlessly. Talking to people who have been there. Learning the funding steams and what is available, what you can afford. Don’t be hampered by worry. Keep writing down your questions and you will stay focused and when you come across an expert you can ask. But just as you’ve done for your kid when he was growing up; you push your agenda — politely and tactfully — and you don’t accept answers that feel wrong.

You can do this. Stay strong and focused. Eyes on your kid!

Please contact your US Rep! It is easy when you use the capwiz application.  This is not about handouts. This is about a leg up!
House to Vote on Bill that will Cut Billions from Disability-Related Programs

Tell Your Representative to VOTE NO on the House Budget Reconciliation bill.

The House Budget Reconciliation bill is expected to reach the floor of the House of Representatives on Thursday, May 10.  Programs for low-income people – children, families, seniors, and people with disabilities – would be hit hard by cuts in the bill.

Your help is needed to educate your Representative about the need for a balanced approach to deficit reduction.

Some examples of cuts in the bill that will weaken programs serving people with disabilities and other low-income populations:
The Medicaid program would be cut by $28 billion over 10 years through changes in provider taxes, hospital payments, maintenance of effort (MOE) requirements, and payments to territories. People with disabilities are likely to face decreased Medicaid eligibility and benefits as the states adjust to the reduced federal participation.
The Social Services Block Grant (SSBG) that funds special services for people with disabilities will be repealed.
People receiving food stamps (SNAP) will see their monthly assistance reduced; 2 million people will be denied SNAP help altogether.
Please call your Representative and urge him/her to vote “NO” on the reconciliation bill.

What to Say:
Please vote against the House Budget Reconciliation bill.
Deficit reduction cannot be achieved solely through more spending cuts for programs that serve people with disabilities and other low income populations.
Revenues must be part of the equation.

Use the Arc’s Capwiz tool to send an email — easily! Save food stamps and other supports.

Every now and then Nat tells us he would like to send an email — well, we ask him if he wants to and usually he says no. But today he wanted to. This was after we had a conversation about his new job, which is at a supermarket near his day program. Nat told us that he “used the computer” (and indeed, the job coach trained Nat in safety skills on the computer) and also that he put the carts “in the right order.” We asked him where he put the carts and he said, “in the cart,” which is also accurate; they get shoved one into the other, as we all know. (The reason I comment on accuracy is that in the past Nat has had default answers that he gives when he wants to get us off his back and stop talking to him. So often he would answer correctly but untruthfully. But when he is in the mood to communicate, he struggles to find the precise word he wants and you can depend on this being a recap of exactly what happened for him.  When he opens up to us like this, it takes my breath away — but never my words. I store it away and then I have to tell the world, write it on thy doorposts and upon thine gates, that this is a real person, with an entire inner life, and just a different way of living it or talking about it. That fact is of Biblical importance to me.)

Back to the conversation itself. He has also told us that Sean is his job coach. And Holly is his house manager. You will see in his email that each line is a separate paragraph, about a different topic!

The cool thing is that the whole conversation began with Ned asking Nat what was going on, and Nat replied, “Not much.” He is really learning how to converse the way we do, down to the silly small talk. (Chit chat is the true silly talk, not the self-talking Nat does, which actually has meaning!) But I think maybe emailing works for him because it is in a clear context: you are writing to someone, not simply for the sake of writing (after all, who in their right mind would write just for the sake of writing? Oh, yeah, never mind…)

And here is the email, which also talks about what he did today — he went to the swim qualifiers for the Special Olympic State Games which will happen in June. He won gold medals in all three of his events. He told us “lunch schedule,” and by that he meant, we should stick to the schedule and give him lunch after swimming.  It’s all there in the email. Read it for yourself, and see how much you can glean about Nat’s life these days.

How are you? Swmming lunch car gold medal.
House holly reeses bed shop mom
Shaws work cart candy computer tipe sean.
Im good love
Nat

Nat came home and had a snack, after his snack Nat joined N for a 45min walk around the area. Upon their arrival at the house, Nat came with N, D, and me to the grocery store to pick up some dinner ingredients for the remainder of the week…– Very Abridged Notes from the caregiver, 5/2/12

I often think about how I learned to connect with Nat. There were three components: observation, education, and projection.  First — all his life — I would observe him, plunge deeply into my interactions with him just to gain a comprehensive knowledge of his ways. When he was a baby, I would do what any mother does — sit on the floor with him, gather him onto my lap, talk to him, read, sing to him — and watch and learn. We all get to know our babies and kids, whether we know it or not. They’re utterly familiar strangers, no matter how their neurology flows.

Over the years I have educated myself about people in general and autism specifically. The best thing I ever did I think was first to watch Amanda Bagg’s video In My Language, for the biggest brain explosion of my life. There Amanda — non-verbal and autistic — typed out what she thinks about her perception of things and why she stims, what she gets out of it, what things look and feel like to her. Why we have no right or even justification to impose neurotypical mores on her. I remember she says something about how beautiful running water is to her, something like that, and she kind of pities the NTs for not being able to feel that same fascination. After that, because of Internet communities, I was able to befriend certain adult autistics and ask questions about what does this or that feel like, what do you think about this, what should I do about that. And I also went to a few ASAN meetings where I listened to the conversations of autistic adults, and got a sense of what it’s like to perceive differently and more importantly, to be perceived as less than other people. That was and is my education in being autistic, all so that I could consider new things about Nat.

Projection, however, is neither intuitive nor cerebral. By projection, I mean imagining and hoping based on what I feel. I feel something when I’m around Nat, and who knows where the feeling comes from — could be him, could be me, could be both — and I make an assumption about its meaning. Because of the wide range of possibilities, however, projection is the most difficult aspect to get right. Where do my feelings end and yours begin? This can be hard to determine for some of us.

I have said before that depression is a part of my life experience, as is mood swinging in general. So sometimes I wonder if the sad feelings I had during Nat’s babyhood were about my own depression, or about realizing that there was “something wrong” with my baby. The nebulous borders of emotion are tricky and treacherous, but they can also be joyous. For the times that I have felt closeness to Nat, the times where I suddenly “get” him and he gets me — can there be anything better, in a mother’s life?

So just now as I was walking downstairs after waking up Ben for school, I found myself thinking happily about that particular routine, Ben’s, where I get up at 6, make coffee and his lunch, and then wander upstairs at 6:45 to get him up. He and I both know there will be several more wakings before he shuffles into the shower. It’s almost a game. And after I walk back downstairs, I feel happy for no particular reason, eager about the new day. It was this that made me think of Nat, and his day. Last night I’d read those shift notes from his caregiver, and saw all that he does, and this morning I wondered if he was happy with that. I felt a pang inside, worried. What if he isn’t happy, and no one knows it? That same old irritating sharp fear, like a tendonitis in my heart. But then, wonderfully, I remembered something: I’m the one with depression, not him. I’m the one who has trouble with certain boring routines, and other times I absolutely adore them.

Why should I assume that anything I experience is the way Nat does? Just as projection once aided me in connecting with Nat, in realizing back then that he is just a boy and not a puzzle or monster, it may also be getting in the way of my letting him go. He’s separate, different from me, grown up, and apparently happy.

Night after night we are watching Game of Thrones, Season I. (I say “Season I” because I have not yet seen Season II so do NOT spoil it for me!)  The character and situations of Tyrion fascinates me, in terms of his disability. Tyrion Lannister, played by the outstanding Peter Dinklage, is a dwarf born to a wealthy and powerful family. He is well-educated, well-dressed, and highly sophisticated in his outlook on life and his self-expression. He is not trained in weaponry, but he is very brave. If he heard me say he was “very brave,” however, he would probably slice me up with sharp sarcasm. You don’t patronize this guy. People learn this quickly with Tyrion. When one character asks him why he reads so much, Tyrion replies, “Look at me,” and points out the obvious: that he is a dwarf that no one would care about or respect or fall in love with.  But he tells the other guy that he loves living and therefore does what he can to enjoy himself.  He blatantly pays for his love and sex, he bribes his way out of any diffficult situation; he even gets another character to fight as his proxy in a duel to the death.

There is much to admire in Tyrion. Probably the best thing about him is his outre character, his unabashed participation in everything around him. He doesn’t shrink from the public, even though people call him “Dwarf,” and “Half Man,” and worse. His skin is like rock; nothing like that bothers him.  He knows who he is and the attitudes of others toward him mean nothing. Tyrion is a great example of inclusiveness — the family treats him almost like an equal, but not really, though even this is more than I’d expect from people living in a Medieval-like era. They don’t lock him away, or kick him out on the streets to beg for his food. The way he is just a hair beneath them (no pun intended) makes sense because these are not supposed to be modern times. What I love the best about the portrayal of Tyrion is that people’s treatment of him does not stop him from getting what he wants and living a fun life (such as it is in such a brutal culture and era). He never corrects people or asks for Person-First language.  It got me thinking about how much more sensitive our society is to the use of words and the need to accommodate — which is very much the way it should be — however there is something stunningly admirable to see a character like Tyrion fighting everything and everyone just for his dignity. No one loves him like an equal; and yet more than once Tyrion says how much he loves life. Watching and listening to him, it is easy to see that this is true.

To go out in public with such an obvious difference from everyone else — this just takes my breath away. If you read this blog you know that I have always had a problem with going out in public with Nat, though less so these days, because of the way people stare at him when he does his self-talking. The anger and sadness I feel when I see that is like an iron ring around my neck. But if I could be like Tyrion, and just focus on the love of life and my dear son, nothing else would matter.

Driving away from Nat’s house today, I was unaware that I was happy. It only occurred to me later in Home Depot (getting mulch with Ned) that I didn’t feel the way I have sometimes felt in the past after dropping Nat off. The bad feeling is a little bit of the emptied-stomach grip you get with fear. Empty stomach, cry in the back of the throat, smile pasted on because I’m trying. I didn’t feel any of that today.

All day I’ve been trying to figure out why. Certainly this is not the first time I felt happy there. The house itself is a happy space. I don’t know why. I didn’t buy it; the other mom did. I helped decorate it, but this is more than bold-colored furniture. It isn’t even the style of house I like and there’s some ugly fake wood on the inside of the front door. Clearly this is not about looks.

Whatever light there is streams into the front of the house.  It’s like a sunshine sponge, airy and light, sweet and full. Along the southern wall is a typical suburban living room picture window. The floors are bare, new oak that also reflect light, and the walls are a creamy yellow so everything is airy gold. Somehow it seems like every time I’m there the sun is out.

But I don’t always feel happy there, nevertheless. Sometimes there is an unsettled feeling, like no one knows quite what to do. One roommate walks around slowly and looks puzzled a lot. He asks the same questions frequently. He asks me which kind of hug he can give me (it’s always the same: a friend hug, which is side-by-side, arm across the shoulder.) The other roommate bounces here and there, ricocheting off the walls. Nat does his fast walking from his room into the living room and back, and his eyes look too big.  The caregiver stands in the middle of it all, calmly talking to us (Ned and I nearly always go together, which helps).  But maybe it felt like too many planets orbiting, and anyone who reads my blog knows that I hate orbit. It is too lonely.

Today the caregiver had a plan that really sounded like a plan. Kite-flying day in a nearby park, with an autism group. So, a non-judgmental outdoor activity with a lot of people.  A radiant day, and Nat looking very purposeful, very ready for us to leave.  When Nat wants people to leave, it doesn’t mean he doesn’t want to be with you. It means that the next thing that happens is on deck and that didn’t include you so you should no longer be there so that the next thing happens the way it is supposed to happen. For so much of Nat’s life, perhaps his greatest happiness is to know what comes next and then for it to happen so that the next thing can happen, too. I used to draw up calendars for him, perhaps 6 weeks at a time (whatever would fit on a piece of paper), and most of the calendar would say: “school, school, school, school, school. No school, no school.” And then the next week would be the same, with occasional appointments and events interrupting the flow. This is how Nat developed an understanding of time, of how weeks work.  I used to sit down with him, whenever I’d made a new calendar, and read it out loud to him. More than once. Then the calendar would end and I would wonder if he could just go on and on, to the end of time and remind me: “After life, death!”

I wanted to leave, and get onto my next thing. And I felt like Nat did, too. That may have been it: we both had plans.  No, not really plans. Just Sunday sunshine stuff to do.  I wanted to leave, and get onto the next thing.  And all my stomach felt was hunger, real hunger (I’d just had a 14.7 mile bike ride) — no sad fear.  I felt scrubbed out like a big white bowl, fresh from the dishwasher. I was thinking vaguely that after this Ned and I would find a place with sandwiches and just eat them outside somewhere.

So maybe this warm sense of regularity was baking in the bright living room air, like almost-ready cookies, giving us all a sense of anticipation for what’s next, even if it meant that we were not going to enjoy it together.  Not like lonely planets in orbit, but like bright white stars forming constellations.

When I was a little girl, I had gerbils for pets. Queen Victoria and Prince Albert. The times that the Queen gave birth were so exciting. It seemed like on every holiday, actually, there’d be a new litter: 5 naked pink gerblets, mashed together like  fingertips. But there was a danger: the weak ones could be eaten by the parents. “It’s nature,” Mom and Dad would say. “Ew!” Laura and I would say, fascinated. How could a mother eat her baby? Kill her baby? But sometimes, horribly, they do.

We always hear about the law of the jungle, and survival of the fittest, as if that is the way of all things. And in many ways nature is like that. And this provides some with justification for not helping the needy. Worse, this belief allows some to believe that the needy — the weak, the “damaged,” the non-normal — get what nature intends. What they deserve.

This is the most primitive of beliefs, since it comes from animals. But if you think about it, even animals themselves don’t always kill the vulnerable. There are stories of animal friendships, Mowgli-like tales where one species nurtures another, where wolves and dogs look out for humans, where gorillas adopt kittens. Mythical stories like Tarzan, and Androcles. It is not the way of the world, then, if there are memorable examples of other ways.

Every religion admonishes us to take care of each other, too. Why is it so easy, then, for us to forget? I just spent two days in Washington, DC with a ton of other disability advocates as well as CCCAID, the organization I’m working for as Director of Autism Adult Services and Outreach. I met with staff from six different Senators and Representatives offices, all to discuss the need to maintain supports, lifelines really, for people with disabilities.

I talked a lot about the ABLE Act, which is legislation that would allow for families to save money for their disabled children in adulthood, so that they would not lose benefits like Medicaid and SSI. Why shouldn’t we be able to save for our needy children when we save for the non-disabled ones? We take aid for college as well as pay our own money for it. How is it that different for our more vulnerable children to take aid from the government — because statistically they will have a harder time than their non-disabled peers earning nearly enough money to survive — to supplement their needs?

But what’s the “pay for?” I kept hearing this from the aides. “How do we pay for it?”

“We are one of the wealthiest countries on earth,” said Senator Tom Harkin of Iowa, at a reception I attended Tuesday night. And I say we are the lions of the world. We have a fantastic, rich and bountiful country; we have power, wisdom, and the best form of government on this earth. We can take care of our young, and the young of others, regardless of their struggle. We’re not gerbils. Let’s be more like the elephant and the sheep. The bunny and the guinea pig. Koko and the kitten.

But some parents are so scared for their children. They don’t know how to protect them from the world. A world with no certainties, and the threat of disappearing safety nets. In many places there are no safety nets at all. In D.C. this weekend, one mother told me that she knows parents who hope that their children die when they do. They love their children deeply, and yet they hope this.  These are not the parents who kill their children, who drown them or imprison them in a flaming house. These are parents who have no faith, no hope.  They do not want to see their children suffer, and they think that when they go, their children will indeed suffer.

They are sad parents, despairing about the world. And they are so wrong. They have no right to decide that, not about their living children. But they do have the right to be angry. They should be angry. Not at their children, nor God, but at the selfish people who would cut their lifeline funding.

There is always hope.  But hope does not come easily. Unfortunately, just as we have had to work so hard to nourish and nurture our disabled children, we have to work just as hard to help them live adult lives. We can’t turn from that responsibility. And we have to work together to keep our hope and possibilities alive. Life takes work. Hard work. We can’t give up.

We cannot allow our elected officials tell us that programs like Medicaid and ABLE will be eliminated or not enacted because of money. That is cowardice, not prudence. It is not even conservatism; this is not about being careful and watchful of funds. This is about letting people founder. Not helping our fellow man. If we are talking about not funding and helping with those who are more difficult to manage, then we are essentially talking about dispensing with them. Don’t believe what the Tea Party says, about how paying lower taxes somehow restores America to its greatness. The truth is less glamorous, but nevertheless, it is the truth, that lower taxes = less money for supports for the disabled = saying we don’t care.  It is cruelty.

The answer is clear, but very difficult. It is dreary and arduous. It is about one person at a time, one vote at a time, one phone call or email to Congress at a time. But we have to believe in the collective good, that there is power in that, but we all have to do our share.

I don’t want to scare you or make you nauseous. But I’m going to go into the rabbit hole tonight (I’m also watching The Matrix with Ben and Ned), and take you with me if you want.  I’m going to ask you to face your child’s adulthood.

In terms of nuts and bolts technical autism adulthood information, I do not believe I am the go-to source. That kind of knowledge is not my forte; I’m not a big details person. But I am talking to people who are, who have the sharp minds to pull apart the messy clumps of information about adulthood issues — primarily housing and day programs. I want to give a plug to the friend who helped me today, because even though I am not ready to use her info specifically, I owe her and her organization at least that. So click on Autism Housing Pathways and donate something, anything, right now, before you continue reading this. AHP is going to be one of the premier places to learn about housing models, for all sorts of people up and down the Spectrum. And learning about how to put together a home, how to leverage whatever resources you’ve got as well as the three building blocks: SSI, Medicaid, and Section 8.

Piecing together an adult life for your autistic child is not going to be easy, especially given shrinking budgets. But the thing to know is, you must face it. Now. Even if your child is 6. You think about college, you can think about this. Right now it doesn’t seem like much fun, but that’s because you’re thinking, “Ew, if it’s not college, what is it? A life of van travel and decrepit, shoestring day programs? Mall walking and group dinners out at Bugaboo Creek?

Well, yes, maybe, but also, no. I’ve said this before, but it bears repeating. You have to get past how it all looks. First of all, physical appearance is always deceiving. It’s true but it isn’t the whole truth. Nat does all those things. But he is happy doing those things. He is happy. So who am I to say it is not a good life? Because it may look, at times, pitiful?

There is no adult in the world who is as cute as a child. So it is with autistic adults and autistic children. At some point, all children stretch out and pad out into greasy awkward teens and slowly morph into crusty adults. It’s not always pretty. This is perhaps a metaphor for adult disability. It may be hard to look at adult disability at first. I’m sorry, that is a possible truth. It is how we are engineered in this day and age — to be smooth, sleek, symmetric, etc. Non-stim. All those Ableist things.

It’s not good, but it is a possible bias that is there within you and so the sooner you face this malaise, the sooner you can get over it. The ugliness is within us, and it is not our disabled children at all.

So once you know this, once you get past the strangeness, awkwardness, and all the other DIS kind of stuff, you just have a guy, a person that you need to get to know. Luckily, if this is your own child, you have not only gotten to know him, you love him, and so you are already past the awkwardness of all the DIS-related stuff.

I used to wish that people could know Nat just the way I knew him so that they would not think his behavior, his presentation, was ugly. That’s why I started writing. It was pure Mother Selfishness. I wanted the world to love Nat, not revile him.

So let’s say you are more highly evolved than me, and you are past all of that stuff. So then what’s the problem with facing that they are going to be adults with lots of challenges? You already have that in their childhood. Is the problem that you have to face that they may not go to a traditional 4-year college, live alone, work 40 hours a week, have a family?

I’m asking because I’m so different now, I can’t even remember!

Yes, I can. I still feel sad driving away from Nat’s group home! Even though I had a big hand in creating it!

But for the most part it has become so easy to just face it and go full steam ahead.

You, my friend, must plan. You must face different scenarios. You must deal with it. Emotionally, financially (start saving now, not in his name, make a special needs trust fund), and informationally. Bite off whatever tiny chunks you can, chew them, let them digest, leave them for a bit.

Then come back to your meal.

On the most selfish level, the most difficult part of having a child with a disability might just be that you have to face your own non-existence. Who the hell wants to do that?

But — need I say it? You, wonderful, lovely, unique you, are not going to live forever! Argh. I hate that.  And your child as an adult will need support one way or another. That is just a part of what his life will be.  The sooner you understand that you can and will deal with it, bite by bite, the better equipped you will be for that eventuality. And that, dear reader, is the best way you can parent and love your child.

The ragman he draws circles

up and down the block

I’d ask him what the matter was

But I know that he don’t talk.

–Bob Dylan

I come home and the street is covered with pale blue and pink drawings and signs. Big fat chalk stubs lie next to the curb in a pastel stupor. There are tons of powder-faced little kids in the street, balls bouncing, plastic scooters fallen over, and some of the kids I think I don’t know, and then I realize they are the neighbors’ babies, but now they are little people on legs. They’re drawing with chalk on the street, just like Max and Ben used to do. Selling cloudy lemonade and colored rocks. I am so old, I’m standing there in high-heeled boots and a handbag, while everyone else is in crocks and sneakers.

Nat is with us, walking back and forth, shaking his fist back and talking to himself. The baby, a neighbor’s kid, looks at him and says to my neighbor, “He’s funny.” And so it begins again, the long process of the next generation of children, understanding about Nat. I guess it’s human nature to notice what is out of place and talk about it. Or at least it is neurotypical human nature.

We had just gotten back from Nat’s house. Nat’s new roommate moved in today. We went to the house to have pizza with everyone and to bring Nat home for the night. I think it was a good idea to take Nat home and let him decompress; it’s a lot to suddenly have a new roommate and all the families there visiting. Plus Nat’s new roommate is extremely active, maybe even moreso than Nat. I think he and Nat will have a lot of fun together because they are so similar. They even eat pizza in a complementary way: Nat pulls off the cheese and eats the crust; his new roommate eats everything but the crust.

But Nat was very quiet. He and his caregiver had gone on a huge walk today, and he was worn out. I, of course, read into it, because I have been down lately, and so because I still haven’t detached completely from Nat, I assume he was, too. And maybe he was. Maybe he was mixed, because although his new roommate is great, it is a change.  I’d ask him what the matter was, but I know that he won’t talk.

But I don’t know. As I said, I’m in one of my phases where I feel outside of all my worlds, floating. I don’t know where I fit. I’m feeling like I’m orbiting around everyone else, except I feel connected to Nat, except that I don’t know if I’m right about him. Max is off having the time of his life. I am continually struggling with how much distance I’m supposed to give him. I’ve overthought it so much that nothing comes naturally.

Things are a lot more natural with Benj, because he is so forthright about his feelings. When I’m bugging him, you know it, he gives me a look or tells me. When he is feeling cuddly, he finds me. I wish the other two were like that. But right now Max and Nat are so apart from me that I feel almost done as a mother, and I don’t want to be done. Yes, often I love this new phase of life where I’m free. So free, I can ride my bike for 2 hours every day and still get all my work done. But I’m not happy today, or yesterday. I’m eating way too much, because there’s that empty pocket inside my gut. I don’t know how to fill it. Chocolate? A doggie? Ned and I went to look at dogs today, at the MSPCA, but I wanted all of them, not just one. So we came home with none.

Came home with our tall drink o water son, with the innocent eyes, more innocent than the boy-baby who pointed at him.

I tell myself this is just a feeling and it will pass, but I wish it would. I wish I was back down on earth again with the rest of the humans.  I’m over here, with my damned laptop, my addiction. So I look over at Ned and he says, “What, Susie?” as if all is well, as if all it is is that we’re just home in our livingroom while our sons live their lives, whatever they may be.

And kind of just like that I’m reeled in. For now, but now is good.

What’s important? It is so easy to forget, and lose yourself in sadness, grief, and regret. Especially as a parent, which is the epitome of hope — your decision to have a child is your expression of faith in the goodness of life, your commitment to keep us all going.

So what happens when we have our kids? We get caught up in something external to the child, something tangential to the reason we gave birth in the first place. We start living through our kids, rather than watching his life unfold.

I had a conversation with a friend today on the train, we were both done teaching at the same time, and she told me about how she writes. She has a unique and fascinating book coming out at the end of the month, and so I get a lot out of talking to her — we have both been through similar experiences via publishing and writing. She told me that her book came alive when she let go of trying to write it a certain way, or for a certain audience. It just was there for her; she saw and heard the characters’ conversations as if they were real. I have experienced that, too. There is nothing like it, when your characters become real.

I’m thinking about what my friend said because it applies to loving our children. I think that when we let go of that script, that frame around them — of what they should be and what we deserve to get from their lives — we are suddenly with them. They are real in a way they never were before, because they are just being themselves, their glorious selves. We can let them be themselves and rejoice in that. I think that is the contract we make with God (yes, I believe in God, you may call it nature or something else, whatever it was that made you take that leap into creating life). The contract is that we will be given the chance to have a child, and we must love that child exquisitely: with nurturing, educating, developing, disciplining. Yes, even that. Boundaries help them know where they end and others begin.

Why am I saying all this? Because of my friend, I guess, but also because I know that I enjoy my children more when I am just with them, plunged in. When I do that with Nat, just exist with him, next to him, taking my cues from him — that is when the love is the strongest.

The work and learning continues for all of you.

And if  your adult child has moved into a new living situation, here are some things to think about.

Lesson 1: Remember what is important

You have to keep your eye on the prize: your child’s wellbeing. How do you do that?

1) Concern yourself primarily with what your child did, is doing, or will do. Look at him. Talk to him. Hug him if you can. Be affectionate but also be respectful. Do your parent job by observing keenly, taking in any changes (positive or negative) and consciously noting them. Is he more active? Wide-eyed? Stimmy? Talkative? What is he talking about? What words and sounds are you hearing? Are they okay?

You have to look deep inside, to your wisest part: your instinct, and find the truth there, asking: Is he doing well?

2) In terms of your dealing with all the other people involved: keep your head above any squabbles — whether among the other families, the service providers, the staff — anything not directly about your child.Remember that in any workplace or group, there will be gossip, guessing, rumor, innuendo. Try not to engage. To discern the truth, if you really have to, ask the person who can most directly have knowledge of this bit of talk or who can most directly have an impact on it.

3) Frame complaints as questions, not accusations. Do this by assuming the best of each person; that will effect your outlook and your tone.

4) If you’re emailing staff or other parents, CC only one other person, just to keep it professional. Don’t CC the whole chain of command: that can appear threatening.

5) Always call before coming over. This is a home, and it is not yours.

6) Be friendly and interested in anything the staff or other families want to tell you. Always listen, to be certain that anything relating to your kid is going okay. But don’t listen too carefully to details that might be just unsettling gossip. Safety and wellbeing of your child: that’s what you need to know about.

7) Don’t be ready to jump ship as soon as anything unexpected or unpleasant happens. Remind yourself that this is a home, not a laboratory. Not a classroom. Things cannot be perfect, or even the way you dreamed. Things can only be real life and you have to decide what you will and will not accept. Decide on your non-negotiables and let the rest ride. You can always wait a day and deal with something non-dangerous at another point in time. Check in with your child in whatever way you can to assess the reality.

For me, the bottom line is Nat’s safety and happiness/contentment. He might be more anxious than we’d like, but it is a new, stressful situation. That’s the reality. His staff are good people, well-trained, and caring. That’s another fact. His parents are highly involved, loving, but very intense. That’s true, and it’s okay.

Nat will live through his current anxiety. Like all of us, it is good for our children to experience living through difficulty and struggle. In a group home situation, the more we can step back and see each person’s reality and keep focused on what’s important — the child’s wellbeing — then we can let go of the little things and breathe easy.

I had a piece published in Lisa Belkin’s column at The Huffington Post today:

Susan Senator

Author, Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts

I went to the supermarket the other day and on my way out to my car I saw a young employee walking eagerly towards a stray shopping cart. He caught my attention because his stride was a little too coltish; his smile was a little too giddy. He was “one of ours,” as my husband Ned likes to say with fondness when we spot someone who’s probably autistic — like our son, Nat.

My son Nat is severely autistic, and even though he is 22, I still get a little frisson of pride mixed with fear when I am out with him. Fear because of all the times over the years that he has erupted in public, angry and scary, over something I couldn’t control — like being in the “wrong” supermarket (he did not believe that the boutique-ish Whole Foods was a real supermarket).  And of course I feel proud, too, when we’re out together because first of all he is a truly happy soul, with a goofy gigantic smile. But more important, any time we are out and it goes well I feel triumphant. How many moms feel gleeful and victorious after a trip to Starbucks with their 22-year-old sons? But if Nat has asked for his brownie on his own and been understood by the barrista, score ten points for us.

So anytime I notice someone like him out in the world, I get all soft and squishy — another of my husband’s phrases. Especially if I see one of ours working somewhere. I think this goes way back to that terrible meeting at his school where I realized the team was gently coaxing us away from academic goals for Nat. The conversation around the IEP table was full of ugly gray words like “pragmatics,” “training,” and “voc.”

But over time I adjusted to this, and eventually I took it and ran with it. Nat getting a job became as much a fixation for me as getting into college. The draconian realities of his challenges made us let go of one life for him, but I sure as hell was not budging when it came to his working. I wanted him to make his mark on the world anyway. I wanted everyone to see Nat as a real person and not some guy with a disability.

Not that he slid right into it, but he did seem to take to a job a lot easier than to school work. They started him on Meals on Wheels, to get him accustomed to the concept of going to work. As soon as he had it down – riding in the van, picking up the meals, bringing them into the person’s home – he was like lightning. When a task makes sense to him, and creates order in the universe, he is the best worker around. Very few people can keep track of order and routines like Nat can. So there are certain jobs that are perfect for him. Eventually the school got him a job at a Papa Gino’s pizza restaurant, assembling boxes. He learned his job so quickly that the problem became basically how to get him to stop making boxes long enough to clear a place for himself at his table. His supervisor would look in on him and find him surrounded by towers of cardboard. The restaurant offered him a second job of delivering coupons in the neighborhoods nearby, and this was his best gig yet. Nat has always been a perpetual motion machine, with long legs to match. Even as an infant he had pushed himself up from my lap on his tiny fat baby legs.  Walking around a neighborhood with one defined task was a dream job for Nat.

Recently I heard that his Day Program was helping him apply for a job at a supermarket, putting away shopping carts.  But, they told me, he’d have to have a job interview and pass a psychological test. There’d be a criminal background check, and a two-week trial period. “This is not playtime,” the director of his Day Program told me.  “This is a serious job.”

So when I saw the guy like Nat putting carts away, I just had to see what he was like, and how he did the job. What were the pitfalls, what sorts of things did someone like Nat have to watch out for? I decided to test this employee, a small, subtle test. I just wanted to see what would happen if I pushed the cart over to him but then veered off to return it myself, something a little out of the ordinary.

Nothing happened, of course. He noticed me out of the corner of his eye and just let me put my cart away. He knew his job, and the store had trained him carefully. I felt really stupid on a number of levels. What was I thinking? That because this young man had a similar diagnosis to Nat, that I could interchange them?  Of course not; he has a whole life too, just like Nat, and perhaps a mother who wants him to make his mark as well!

I see that I have to be careful not to take “one of ours” too far, into patronizing and trivializing.  But it’s tough to remember, as Nat’s program director said, that this is serious, and real, even though that is exactly what I want for him.  Nat is not a typical 22 year old, able to tell me to back off and give him space.  I have to remember that just because he is adorable and seems young, he is absolutely an adult who loves his work.

So I guess this means I should not start shopping at his supermarket…

I often like the stuff that Landon Bryce does at ThAutcast, and this post feels as if it comes directly from my own head (although because there are statistics and numbers, those who know me understand that it never could). I tell people all the time that although Nat “tests” mentally retarded, intellectually disabled, call it what you will, he is clearly much more highly functioning than his scores show. I have witnessed him struggling to take those damned tests, I have seen that he knows that answer, but I also know that he is focusing on the part that interests him, not the tester! I would always say to the doctor administering the test, “Oh my God, he knows that! He just did that yesterday! You’re just asking it wrong! He thinks you’re asking about what the objects are, not which ones are missing!  GODDAMMIT!”

But why should it matter? But it does. That score made me despair once, so long ago, back when I believed what indifferent, ignorant “experts” told me about Nat. And yet — this is the test that determines whether your child will get residential funding support as an adult. A test Nat took when he was — what, 11? 15? Okay, well, the good news is, Nat tests mentally retarded! The bad news is, Nat tests mentally retarded! In the end, I see a man who has gone way beyond any numerical expectations ever placed on him. Two part-time jobs sharing a job coach with two other young men. Living in a new place with a smile on his face, within four months of entering autism adulthood rat race!

(I know, I repeat those facts all the time, but come on, let the Mama brag!)

Also, we see in these statistics that autistics are not all geniuses, with magical skills! With numbers like that, what do we find? Oh, I see, kind of a spectrum of abilities!  What do ya know?

Anyway, bravo, Landon! I am pasting in the entire post just in case people don’t feel like clicking on a link. But you should subscribe to ThAutcast; it will give you a perspective that will open your eyes. You won’t always like it, but you’ll always find it compelling:

Autism and IQ

Submitted by Landon Bryce on Mon, 04/02/2012 – 13:39

Published in

• Autism
• Cathy Price
• Centers for Disease Control
• Intelligence
• IQ
• Isabelle Soulieres
• Rose Eveleth

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• Read more

 

Here is what the new Centers for Disease Control report says about autism and intellectual ability:

Data on intellectual ability are reported for the seven sites having information available for at least 70% of children who met the ASD case definition (Figure 2). When data from these seven sites were combined, 38% of children with ASDs were classified in the range of intellectual disability (i.e., IQ ?70 or an examiner’s statement of intellectual disability), 24% in the borderline range (IQ 71–85), and 38% had IQ scores >85 or an examiner’s statement of average or above-average intellectual ability. The proportion of children classified in the range of intellectual disability ranged from 13% in Utah to 54% in South Carolina. The two sites with the highest proportions of children classified above the range of intellectual disability (IQ >70) were Utah (87%) and New Jersey (73%). In all seven sites reporting data on intellectual ability, a higher proportion of females with ASDs had intellectual disability compared with males, although the proportions differed significantly (52% for females and 35% for males; p<0.01) in only one site (North Carolina). When data from these seven sites were combined, 150 (46%) of 328 females with ASDs had IQ scores or examiners’ statements indicating intellectual disability compared with 608 (37%) of 1,653 males.

This is how I interpret this:

1) IQ is an antiquated concept.  The idea that a person has a fixed amount of “intelligence” that will remain the same for his or her entire life does not match well with what we know now about the brain and learning.  Teenagers’ IQs can change as much as 20 points in a few years:

Professor Cathy Price and colleagues administered IQ tests and MRI scans to 33 healthy teens — the first time in 2004, when the kids were 12 to 16 years old, and then a second time in 2007-08, when they were age 15 to 20. They found changes in individual subjects’ performance on the tests, with verbal IQ, nonverbal IQ and composite IQ fluctuating up or down, in some cases around 20 points.  In all, 39% of the sample had a change in verbal IQ, 21% in nonverbal IQ and 33% in composite IQ.

2) IQ tests are especially unreliable for autistic people. An IQ test is a snapshot, showing the subject’s performance on one day, on one task.  The capacity of autistic people to succeed on these tests varies more, in most cases, than the capacity of a neurotypical person from day to day and from one set of circumstances to another.  This makes a somewhat unreliable process extremely scattershot in its effectiveness.

3) IQ tests may not match the communicative capacity of an autistic person.  If you cannot communicate your ideas to another person, there is no way to test how intelligent they are.  Rose Eveleth emphasizes the importance of using nonverbal IQ tests with autistic children, after explaining some of the differences between verbal and nonverbal intelligence tests:

The average child will score around the same percentile for all these tests, both verbal and nonverbal. But an autistic child will not. Isabelle Soulieres, a researcher at Harvard University, gave a group of autistics both WISC and the Raven test to measure the difference between the two groups. Although she expected a difference, she was surprised at just how big the gap was. On average, autistic students performed 30 percentile points better on the Raven test than on WISC. Some kids jumped 70 percentile points. “Depending on which test you use, you get a very different picture of the potential of the kids,” she says. Other studies have confirmed this gap, although they found a smaller jump between tests.

4) We can assume that the scores in the CDC report are probably artificially low because of these difficulties.

5) There are still a significant number of autistic people who do have intellectual disabilities.

6) Autistic people with intellectual disabilities matter just as much as anyone else.  They are people, and they are part of our community.  I care very much about keeping them safe, creating opportunities for them, gaining from their contributions, and making them welcome.

Dinner out at the same restaurant we’ve all been going to for years. Years ago at this very same restaurant, Nat demanded that Max remove his knit hat. But Max was at the age where a boy wants to wear a hat. So he said he didn’t want to. I squirmed, wanting Max to be able to wear a hat if he wanted to, and wanting peace. While I squirmed, Nat reached over and clawed Max, drawing blood. I felt as if I’d been stabbed. I blew it, not acting in time. Not protecting Max in time. Not figuring it out. What was the right action to take?

Okay, full disclosure, it turns out the hat Max was wearing was one that had been given to Nat for Christmas. Max had borrowed it, without a word, and none of us thought Nat would mind. Or maybe even notice. I don’t remember anyone asking permission. So here’s a stupid question. Do you think that Nat minded, and was that the reason he wanted Max to take off the hat? If you ask Ned, no. If you ask me, probably not. Nat does not seem attached to objects like hats. Well — it still wasn’t right for us to let Max just wear the hat. But most likely the thing that upset Nat was that he needs things to be a certain way, rather than the fact that it was his hat.

Either way it upset Nat. But Max had a right to keep his hat on. (But it wasn’t his hat.)

We gave Max the hat as a punishment to Nat. Max wore it for years. That was the last time Nat ever hurt him.  The memory of the whole thing makes me feel sick and terrible.

So then tonight, same restaurant. Nat sat down and watched, wide-eyed, for everyone to take off their coats. Ben was slow in taking it off one shoulder. I watched, wishing he wasn’t so slow, remembering the other time. Nat watched, too. “Don’t worry, Nat,” I said, “Ben’s taking off his coat.”

Ben stopped taking it off and stared through his lanky hair. I actually said in a cringy begging voice, “Ben, come on, please?”

Ben just stared. Nat stared back. Ben said, “I’m cold.”

I looked at Ned, unable to deal with it. Ned said, “Nat. Ben is going to keep on his coat. He is cold. Okay?”

It’s not going to be okay it’s not going to be okay it’s not going to be okay, people are going to stare, and we are going to have to leave. And I was ready to sacrifice Ben’s comfort to assuage Nat. But now Nat’s gotta feel uncomfortable and that sucks, too…

But then Nat said, “Okay,” and then smiled.

I asked Ned about it later and he said, “Well, I think that for it to be okay with Nat, you have to feel certain that it is okay yourself.  If you’re calm and certain, he’s calm and certain.”

Hat’s off to that.

Please do not support Representative Paul Ryan’s proposal regarding the budget and Medicaid. It is simplistic and naive. We cannot get rid of our budgetary woes on the backs of seniors and the disabled. It’s expensive to take care of people who need care. But you can’t just say “screw ‘em!” My friend and colleague Cathy Boyle, founder of Autism Housing Pathways, sent me this important breakdown of what Ryan’s proposal would likely mean for adults with disabilities. (By the way, if you are a frequent reader of my blog, that must mean you care about people like my son Nat. If you want to help adults with autism in terms of helping them secure safe housing, then please give to Autism Housing Pathways. Those dollars will go a long way.)

Here is what AHP’s Executive Director has to say about Wisconsin’s Paul Ryan’s budget proposal:

“Rep. Paul Ryan of Wisconsin, Chairman of the House Budget Committee, has made a budget proposal that, if enacted, would have a dramatic impact on long-term care for individuals with disabilities. Regardless of where you stand on the political spectrum, you need to be aware of the implications of the Ryan proposal for people with disabilities.

According to the Arc, [another key disability advocacy group Susan's readers should consider supporting] three key elements would be:

* An $810 billion cut in Medicaid over 10 years (a 33% cut);

* Medicaid would be converted to a block grant to the states;

* All “dual eligibles” would be placed entirely in the Medicare program.

Let’s look at the implications of this to the best of my understanding.

* The elderly and individuals with disabilities represent 25% of Medicaid beneficiaries, but represent 2/3 of Medicaid spending. A 33% cut to the Medicaid budget would disproportionately affect individuals with disabilities.

[Ryan's cut would have deleterious effects on guys like Nat.]

“* Block granting Medicaid would eliminate the individual entitlement to Medicaid. Translated into everyday life, it would remove the right to receive PCA services, Adult Foster Care and Group Adult Foster Care. These services are currently the only source of long-term services and supports for individuals not served through DDS (aside from SSI and Sec. 8), and are also used by individuals receiving DDS supports other than group homes and shared living. It is worth remembering at this point that only about 25% of individuals served by DDS receive group home or shared living supports at age 22.

* Dual eligibles are individuals eligible for both Medicaid and Medicare. When a parent of an adult with a disability receiving SSI retires, dies or becomes disabled, the adult with a disability will (after a certain waiting period) become a dual eligible. If dual eligibles are moved exclusively onto Medicare, they will lose all eligibility for PCA services, Adult Foster Care and Group Adult Foster Care. In addition, the cost to the state of Mass. of individuals on the Medicaid waiver residing in group homes who become dual eligibles would double, as Medicaid pays half the cost of such placements.”

Cathy Boyle

–
Autism Housing Pathways: Building Roads to Home

http://www.autismhousingpathways.net