I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.

Life, laminated

The most exciting thing that’s happened this week is that I came up with a new way to organize our growing collection of picture cards for Monkey’s visual supports. Ta da!

picture cards organizer 2

I had previously tried organizing them with paper clips or rubber bands, and sorting them in envelopes. They have velcro on the back, so they don’t stack nicely, and both of these methods, at their most functional, created too much clutter. I considered something like a binder but then I came up with this lovely system, which is more readily accessible and better suited to what we are using them for. The stickers can be easily peeled off to change categories as needed, and there’s plenty of room for more cards. Yay!

We first started using picture cards with Monkey about a year ago, maybe a little more than a year. He was around 18 months. We started with photographs of different foods that he would eat and a choice board. At the time, he had basically no speech that we could understand, so we used the board and pictures like a rudimentary PECS system that allowed him to tell us what he wanted to eat or drink.

Fast forward to now. Monkey is HIGHLY verbal, and we are steadily increasing our use of visual supports. But why is that needed, if he can talk?

It’s not – I just really enjoy laminating stuff.

Just kidding. Although Monkey can offer up such complete sentences as “I wasn’t exactly expecting to see a dragon in my backyard today”*, he often can’t answer the question of whether he wants milk or juice. He has a delay in processing other people’s language. If you offer him a picture of milk and a picture of juice, then he is able to process what his options are, make a choice, and tell you (or point to the picture, but he usually also says the word).

He is much better able to process visual information than auditory information. (His hearing has been tested and is great, by the way. He loves the sound of birds outside.) The more words you use and the more complicated what you are saying (eg. a sequence of steps or events, two-part commands), the less likely he is to understand. And since he has anxiety around transitions, we started using picture schedules shortly after his second birthday, to let him know what’s coming and what’s expected, and to give structure to his day.

Right now, there’s a corner of our living room that is basically a shrine to visual supports. In addition to my lovely organizer pictured above, there’s a daytime schedule and a bedtime routine schedule, both with velcro so we can change them. Then there’s an activity schedule for structured play-time, an activity choice board for unstructured play time, a first-then board (“first wash hands, then snack”), and I am in the process of making a very simple token board. I’m also considering making some cards to put on a key-ring and carry in the diaper bag – for instance, one that says we’re “leaving soon”.

The activity schedules are fairly new and it’s amazing how his play has changed already. The bedtime schedule has been particularly helpful with his anxiety about bath-time. He was getting hysterical every time we put him in the bath, to the point that we couldn’t wash him at all. Apparently, this was because he never knew if we were going to wash his hair or not. If I told him “We are NOT going to wash your hair,” he didn’t understand, especially since he was already upset. But now he knows that if the picture of a bathtub on his schedule is replaced with a picture of a kid having his hair washed, it’s Hair Washing Night. That takes out the element of uncertainty, and now he climbs happily into the tub himself.

Every time I add a new system like this, there’s a part of me that thinks “Aren’t you taking this therapy mom geekdom a bit far? Your son is smart and verbal, do you really need a gazillion laminated pictures to communicate with him?”

But the more we use the pictures, the more it’s clear that, yes, we do. His ability, or inability, to understand and process spoken language at a certain speed has nothing to do with how smart he is. He is a picture kind of guy, and I’m learning to embrace that.

Besides. Anything that makes my life feel more organized and manageable right now is very, very, very welcome.

 

*This is from a TV show and is called delayed echolalia.

Note- I use LessonPix.com to make my cards. It’s a great website, user friendly, allows you to use your own photos, and the pictures they provide are nice – definitely recommend.

Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.

Pass the acceptance, please

Apparently this Saturday is the beginning of Autism Awareness Month. (It’s also my local library’s spring book sale, but that’s probably not as exciting to you all as it is to me.) Or, better yet, Autism Acceptance Month. Because people are already aware of autism, aren’t they?

People are aware of autism as something so horrible that it’s better to let their child die of measles or be paralyzed by polio than risk the (scientifically dis-proven) vaccine-induced onset of autism. They’re aware of autism as something so horrible that it excuses a parent killing her own child. Does this kind of “awareness” help autistic people function in society, form meaningful relationships, find employment, live rewarding lives?

People are also apparently aware of autism as something that has a particular “look” – hence the often made comments “You (your child) doesn’t look autistic!” (I guess autistic people are supposed to be green??)

Forget about awareness. All it does, as far as I can tell, is make people think they know something when they actually don’t.

You know what I would like? I would like to be able to take my almost-three-year old son anywhere in public and not be glared at, told I shouldn’t be there, or hear muttered unkind comments. I would like to be able to take him to story/craft time at the library and not see him excluded by a particular parent volunteer because she doesn’t understand his behavior.

((Do you know how much it hurts, after a lifetime of being excluded by neurotypical people, to see your son (who is totally sweet and awesome) being excluded before he’s even three years old? It’s easy to say to someone who’s been rejected and excluded by other people, “Well, you’re such a cool person, that’s their loss.” It’s even true, but it’s incomplete. Because when you reject and exclude me, that’s my loss, too. When you reject and exclude my son, that’s his loss. That’s our pain and our anger and our loneliness, every freaking time.))

I shouldn’t have to put a big sign on my kid that says “I have special needs! Be nice!” in order for people to treat him with kindness and respect. Maybe I’m being overly idealistic here, but it would be cool if people could treat him that way just because he’s, you know, a PERSON.

What I want for him is acceptance. Acceptance, understanding, and support. I want people to see his awesome personality AND his differences, his challenges AND his gifts, not one or the other as if they’re incompatible. Because it’s all rolled up in the same human being.

How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!

Caregiving. Is. Work.

Congressional Republicans, by considering legislation that would eliminate SSI benefits for disabled children, have given me an opportunity to write again about one of my pet issues: the devaluing of caregiving.

If the politicians responsible for this particular budget-saving strategy had any ability to be honest, they would say, “We are unapologetic human scum who have no problem taking assistance from children with cerebral palsy and autoimmune diseases and cancer and giving that money to our billionaire friends so they can buy a second island.”

Of course, they don’t say that. Instead, they write:

“One rationale for this option is that providing SSI benefits to children may discourage their parents from working. Unlike Temporary Assistance for Needy Families, a welfare program that aims to help families achieve self-sufficiency, SSI imposes no work requirements on parents and does not explicitly limit how long they may receive benefits as long as the child remains medically and financially eligible.”

Yeah. Because, you know, it’s not like taking care of a seriously disabled child is work. I mean, those parents might be doing a lot of stuff that would normally be done by nurses, and they might even be doing it 24/7 and be chronically sleep deprived and on the verge of a nervous breakdown, and there might be the life of another human being depending on what they do every fucking day and night, but that’s no excuse for not having a real job.

According to this page , which cites the SSI Annual Statistical Report from 2011 as its source, about 1/3 of single-parent households with a child on SSI have a working parent (i.e., the parent is working and raising the disabled child by themselves) and 2/3 of two-parent households have a working parent (i.e., one parent works and the other takes care of the child). And according to this SSA report from 2005,

“Most children receiving SSI lived in a family headed by a single mother, and less than one in three lived with both parents. A very high proportion, about half, were living in a household with at least one other individual reported to have had a disability.”

In other words, that 1/3 of two-parent families where neither parent works is actually 1) quite small, as most child SSI recipients live in single parent households, and 2) are mostly households in which one of the parents is also disabled and unable to work, leaving the other parent as the caregiver for the child and perhaps for the spouse as well.

Such lazy people. I mean, who spends all day every day taking care of their disabled child and spouse? What kind of excuse for existing is that? Get off the couch and get a real job!

My son, Monkey, who has multiple medical issues that affect things like eating and breathing and sleeping and who also has developmental delays, does not receive SSI benefits. We applied for him at one point and were denied; the requirements are quite stringent. The other parents I’ve met whose children received SSI were single mothers who worked full time or overtime. (But, you know, lazy.) Monkey does receive Medicaid, however, which has been extremely important for him and for our family. Which brings me to my next point.

The politicians again:

“Rather than provide a cash benefit to parents without ensuring that they spend the money on their disabled children, policymakers could choose to support those children in other ways. For example, states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families.”

The irony of this statement coming from the very same people who want to block grant Medicaid, reinstate lifetime limits, etc – taking medical care away from the disabled children they are talking about – and who support a nominee for Secretary of Education who has no idea what IDEA is, would be entertaining if it were not so sickening.

To these people, who preach from their offices about the value of work, who are so afraid they might discourage some low-income parent of a disabled child from working, I want to say something clearly: CAREGIVING IS WORK.

It is work when you’re taking care of a patient in a hospital.

It is work when you’re taking care of a patient in a nursing home.

It is work when you’re taking care of a disabled person in a group home.

It is work when you’re taking care of a disabled person in their own home.

It is work when you’re taking care of a disabled person in your home.

It is work when you’re taking care of an elderly person in their home.

It is work when you’re taking care of a child in their home.

It is work when you’re taking care of a child in your home.

It doesn’t matter whether the person being taken care of is related to you or not, whether you are being paid or not, or what kind of building you’re in. It’s the same work. Someone has to do it if our society is going to be anything worth living in, worth even calling a society. Wherever you are, whether you make money or not, if you are taking care of another human being who depends on you for that care, then you are working.

 

For more thoughts on the ways our society systematically devalues caregiving: Caregiving vs. Capitalism

Evidence that Daniel Tiger’s Neighborhood is really an anarchist commune disguised as a constitutional monarchy

Monkey’s favorite show is Daniel Tiger’s Neighborhood, the animated spin-off of Mister Rogers. He watches it a lot. Thus I also watch it a lot. As in, I have entire episodes memorized down to the inflection of each sentence and I sing the songs absentmindedly in public restrooms.

In watching this show on a daily basis, I have noticed things that lead me, unavoidably, to the conclusion that despite the presence of King Friday and his royal family, the whole neighborhood actually operates on anarchist principles.

daniel-tiger-anarchist

1) There’s no money. Mom Tiger goes to the bakery and gets bread and leaves. No money exchanged. (There’s something like a cash register on the counter in the bakery, but nobody uses it and that thing looks seriously antique; Baker Aker probably keeps it around as a curiosity from one of those weird capitalist societies.) The whole family goes to a restaurant and there’s no bill. Daniel goes to the doctor and nobody is asking his mom for a copay first. I don’t think they even have library cards.

2) Free public transportation. (Also sentient. Bonus points.)

3) The Enchanted Garden is a communal vegetable garden and orchard where anyone can go to get free food at any time. There’s also a community farm where they keep the livestock and horses that anyone can ride.

4) There’s no janitor in the neighborhood, so presumably everyone – including the royal family, who can be seen sweeping walkways after a storm – does the deep cleaning stuff on a rotational basis. Further evidence for this is the song, “Cleaning up is a gift we give / To each other each day.”

5) Another song: “Everyone’s job is important! We all help in different ways.”

6) Another song: “If there’s something you need, try to make it yourself.” (Not good capitalism!)

7) All the jobs that would be minimum wage in a capitalist society (grocery store clerk, waiter, babysitter) are performed by Prince Tuesday. The royal family can be seen engaging in various mundane tasks such as cleaning, and King Friday’s only real role seems to be announcing holidays and the occasional community vote (more on this later).

8) They have an official holiday called Neighbor Day which is celebrated by performing random acts of kindness.

9) There are no police officers in the neighorhood. When Daniel fantasizes about being a police officer, all he does is hold a stop sign to help animals cross the street, which is proof that he’s been brought up with no conception of law-breaking or prison.

10) Unless Daniel’s parents are independently wealthy from an inheritance, there’s just no way that Dad Tiger could be supporting the whole family with his very part-time clock business. Even if he does export some of them to other towns, how much of an income does that really bring in? With Mom Tiger as a stay-at-home, how are they covering all the medical bills for Baby Margaret’s birth?

As far as I can tell, everyone contributes to the community by means of their job and basic maintenance of the communal spaces. So Dad Tiger makes clocks and does handyman stuff, Mom Tiger is a caregiver, X the Owl is the librarian and also in charge of the community recycling program, Teacher Harriet teaches and runs a community garden, Music Man Stan gives free music lessons and instrument repairs, Lady Elaine runs the factory, Mr McFeely is the mailman and resident pedophile who would be in jail just on the basis of his name if they had a jail, Henrietta Pussycat sings and dances at the local nightclub, King Friday and Queen Saturday take care of the administrative stuff and announcement making, and they all help with cleaning and gardening and such. In return, they all get the above-mentioned free transportation, free food, free childcare and school, free healthcare etc.

11) This one’s sort of the exception that proves the rule. In one episode, King Friday announces that the neighborhood is getting a new piece of playground equipment, and since the children are the ones who will use it, they will vote on whether they want a swing-set or a slide. Out comes the polling booth and tyranny of the majority, leaving the “losing” children disappointed and despondent …. And this would appear to contradict my whole theory.

BUT notice that it’s the children who are voting. No actual democracy or constitutional monarchy lets children vote. And the adults don’t vote at all. From this, I conclude that this is a teaching method: the gateway into individual and group decision-making for the children. As they grow up, having personally experienced the limitations of majority voting, they’ll be introduced to more sophisticated ways of making decisions as a community.

So there you have it. I let my child watch anarcho-communist propaganda on a daily basis.

And I feel good about it.