Susan's Blog

Monday, June 18, 2012

Autism Mommy Swami #9: How Not To Do This Alone?

Dear Swami,

This may be the stupidest question you’ve ever been asked. I don’t know what else to do, so I’m writing it out anyway.

My son, K, is 5, soon to be 6 years old. He is verbal as long as he’s not upset (at which point all we get are shrieks, grunts and growls), but he is frequently upset, angry, and aggressive, though he can also be extremely loving and… well… “barnacle like” (which I say with love, I promise… but he literally clings to me every possible moment, which I often love and cherish, but sometimes can’t stand for one more second like when I need to use the bathroom or maybe breathe more than short shallow breaths). K has a lot of sensory issues and a lot of anxiety. Change is extremely difficult for him.

We’ve been struggling mightily since before he turned 3 years old. We’ve had no help or support yet from the school system and have had to obtain all of his services and therapies privately (which I’ve had to run him to and from and pay for out of pocket while also attempting to hold down a full time job out of financial necessity and also care for my 8 yr old daughter).

We have no family here. I am a transplant to the midwest from the east coast and my husband’s family are all deceased. We are not very social people in general, never being ones in younger years to go partying or the like, and literally have no real friends locally.

We are very much alone.

The neighborhood we live in doesn’t have any families with younger children. We have nothing to connect with anyone on. We are not religious and do not attend church.

So very often I feel like I am drowning or suffocating. Like I Yet there is no other choice.

We have no babysitter, no respite care of any kind available to us. I am exhausted…. emotionally, physically, and financially. I am the primary caregiver and the one K looks to… nay… ~requires~… for everything. I spend hours and hours and hours researching everything I can, hoping to find something, anything, that might help. I can’t keep up with the house. The kids are in zero activities b/c I can’t figure out how to get them there and back again and or can’t figure out what K might possibly be able to participate in or tolerate.

Every single minute seems spent already… and yet I truly need to not be alone in this any more… and yet… I have absolutely no idea or concept of how or where to begin to make or find this village I’m supposed to build…much less when I will accomplish this when I can’t even seem to find time to eat or sleep or shave my legs… or think straight.

How do I do this? Where do I start? How can I find a connection when I can’t even get through the day successfully?

Thank you for even reading that, and if you do end up answering this one, thank you both for the answer and for keeping us anonymous.

K’s mom.


Dear K’s mom,

Even though we have already talked over email, I feel the need to reiterate some of what I said to you privately. My advice was to first of all find online support. You told me that you live in Cedar Rapids, Iowa, and that most services available are in Dubuque or Des Moines, hours away. The closest supports are in Iowa City. This means that you have to take every action possible to help yourself. To me, this means find people going through the same thing so that you see and feel that you are not alone (because you are not, by a mile). Even though you prefer face-to-face real world contact, that will be your longer term goal for the moment.

Your choices are limited and your soul is very much in demand by this child you love so much. Everything you say is very familiar. The Autism Swami has had many Alone times, even with groups nearby and caring people reaching out. This is because I, too have my preferences and I am tough to please. I choose my friends so very carefully and reluctantly let people in. But once they’re in, they’re in. And then I hold onto them like a suction cup. But very few can really handle my intensity, so I am alone alot. I love being alone now, but that has taken a decade to grow. I talk to myself, I laugh at myself, I sing to myself. I shop with myself, I berate myself. I am a pretty comprehensive friend of mine. I like it that way. So believe me, I do know what it is like to be alone, whether it comes from geographical distance or just plain pickiness. But I have learned how to embrace it and to feel my strength and revel in it.

But you don’t feel that way; you want an in-the-flesh friend who gets it, and you want time off from mothering.

Well, the ugly reality is, you live where you live and flesh autism friends are going to be hard to find. So what do you do? You look for a friend, period. You cultivate someone. I would look around for a person I feel a connection to, and it doesn’t have to be an autism connection. A good person is a good person, and that person will get it once she becomes your friend. You have to be open and interested to be a friend, and so you will let this choice person know up front what your life is like. Think of it like dating. Some things you have to disclose, others can wait. But once you find one good friend, that should do it for the most part.

Now, as far as respite: see if your support center in Iowa City has staff who can do even an hour a week for you. See if the DDS (Department of Developmental Services, in your state government (look them up on the web) has any funds for family support. Perhaps even your church has a kind parishioner looking to make a little extra money babysitting. You have to be creative and have your eyes open for the right kinds of people, the people who will love your little guy. Even an hour every few days will be a precious relief. Maybe a teacher would come for a little while, someone from the elementary school or a high school kid? You could be in the house but not right in the room.

Given how you feel about wanting friends, I would start with what is possible, rather than what is not. The Internet is as infinite as the Universe, and so you should be able to connect with other parents or autistic adults with whom you can have great conversations online. For example, are you pragmatic and interested in understanding autism in a cerebral and sometimes soulful way? You should read all of my books, first of all, (hey, I can plug on my own blog, right?). Take a look at TPGA, Thinking Person’s Guide to Autism. Or, are you in need of actual ideas and how to do things? Check out Lisa Jo Rudy’s books. You must, you have to read Sunday Stilwell’s Extreme Parenthood blog, and also Jess Wilson’s Diary of a Mom blog. All these women are accessible, smart, humorous, and kind. You can friend them on FB (tell ’em I sent you) and you can connect in a very satisfying way — daily.

For autistic adults who have a mind-blowing perspective, try Kassiane or Landon Bryce’s ThAutcast. You will find others from them.

So what does one do with all of the energy that must go into your child? Well, of course one gives that energy. But you also have got to figure out ways to free your mind a little bit, even if your body is holding your child. Find your non-autism friend and hook into Autism Facebook, and that will be a good start.



Love, love, love the Swami. Positive and kind with excellent concrete suggestions and advice for the writer and all readers.
Thanks for writing and remember, your next book is Ask the Swami mommy!

— added by Linda on Monday, June 18, 2012 at 8:21 pm

“Ask the Swami Mommy” (pesky punctuation).

— added by Linda on Monday, June 18, 2012 at 8:23 pm

Great advice. I too am a transplant and often feel alone. Believe it or not I’ve found some wonderful babysitters on Just make sure that you request experience with special needs and do a lot of fact finding. Especially during the summer, there are many college students out there and teachers of children with special needs who are more than qualified to give you a little much needed time off. Just do your homework…check references, resumes, background checks etc…It will not only help you, it will help your child. My child has no fear of risk and is a very fast runner and engages in elopement behavior. Today I went to a dr appointment and had a new babysitter watch my child. She happens to be a college basketball player (a fast runner who can keep up), a nursing student, and has a special needs little brother.

— added by Julie on Monday, June 18, 2012 at 9:40 pm

Once your son starts school you might also find a friend among the other IEP moms. I have found some very nice acquaintances and two very good friends that way. It’s something to hope for, anyway.

— added by Ohio Mom on Tuesday, June 19, 2012 at 11:07 am

Great post. The internet is a great way to find support groups–both offline and online–these days (meetup, facebook, forums, etc.). I hope the letter writer takes your advice and is able to find a support network even in her town.

— added by JJ on Tuesday, June 19, 2012 at 2:07 pm

I had another idea to share. See if your state has any advocacy organizations for special needs parents. That can be a great way to find support networks as well as information to prepare you for the school years.

— added by Julie on Tuesday, June 26, 2012 at 3:55 pm

One more idea for you to find good respite care is to post an ad with the local college or university. See if they have a Special Education Dept and maybe might have some students looking for some real world experience. Also, your local high school guidance counselor may have some students that are considering a job in special ed. I went all of these routes.

You have to budget how much you can afford per month for this expenditure…maybe it’s only $50. But that should get you at least 5 hours of respite for one little, lovely clingy boy. Maybe more.

What could you do with that time? Go see a movie? Go get your hair done? Go for a run? Take a shower? The options are endless!! Also, I think it’s always very helpful to have more people in your life that can love your son. And I promise you, after living with 2 boys with autism for 9 years and never near family…these caretakers that you bring into your life will love your boy and your boy will love them.

— added by Gemma on Wednesday, June 27, 2012 at 2:51 pm