Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Wednesday, December 17, 2014

Letter to My Son...

Son, we've been arguing a lot lately. I know you are growing into a young man, that you are learning about how your body and mind is changing *as* you change. And change is hard.
I understand deeply that it is just as hard to find out who you are as it is for the world around you to let you find out who you are. There are lots of people here to help you, to show you a version of "adult", so that you can compare notes and see what fits with your personality, your skills, your being. We, the adults who love you, will ask things of you, even demand things of you, that we have learned to be Essential to Adulthood. We are doing our best to equip you with the tools to help you be who you are meant to be.
And you are not any of us, you are YOU. The only you that is just like you. You have been created singularly to do some awesome thing that God has created you to do. You probably have not done that Awesome Thing yet, even though you've done some awesome things. You will probably be in an information collecting phase for a long time yet. That may sound daunting, but know that every step,, leads you to a skill, an experience, a person who is supposed to be part of your road, a building stone for your Awesome Thing.
I know that change is hard. Growth usually comes with struggle, even for plants and rocks. There are times when you will feel like you NEED to hold on, to keep what you had. I feel that way too - that's why I look for the little boy in the man you are becoming. But when we refuse to let go, we put up road blocks on our way to our Awesome Thing.
I want to walk your road with you as long as you'd like me to. Some parts I won't be able to go on, and some times I have to walk toward my own Awesome Thing, a road you won't be able to go on. I'll hold you hand, or I'll hear you out, or I'll give advise, or I'll out right shove you. Some roads I will block you from out of my own fears.
I know beyond doubting that God created you just the way you are for a Divine Purpose, for an Awesome Thing. I also know that God planted you conspicuously in my path, so you must need some of my wisdom.
I am asking, requesting, that you please see me as a Gift to you just as I see you as a Gift to me. I am reminding you that all the people around you are here to be your arrows, your pathway lights. And I am knowing that the Incredible You that you are will follow Your Road to your Awesome Thing. I am respecting that your life is your own, even if we have to share space and the consequences of your decisions.
There is nothing you will ever do that will make me stop loving you, even as we both struggle with change.
And that is all true whether you have autism, or not.
- inspired from a post by Diary of a Mom.

Monday, December 15, 2014

More on this Parenting Guilt Thing...

I know I have belabored this point...
I have over thunk it, torn it apart, put it back together, and tried to refocus around it or through it, or something..
It may not show up in this forum that way, but all my friends have heard it, and my head has heard it too much..

Sometimes I am appalled at how much our parenting is compelled by fear... by guilt...

I was able to see my Mom's guilt, and determined to not pass it on to my kids, though I do not think I succeeded...

I was able to see how my father's fear defined our lives, and determined not to pass that on to my kids, but I didn't really succeed at that either...

The Autism is a driving Fear Factor in our household.  We have inadvertently used it to try to motivate our son into meeting the new responsibilities and challenges he faces as he grows up.  We are afraid.  Afraid he will not be able to use a pubic bathroom independently (still.. at age 10).  Afraid he will not put enough effort into studies to use his intellectual potential. Afraid he will not be able to eat at a table of people without disgusting them.  Afraid he will make someone angry enough to hit back, verbally or physically.  Afraid he will lock himself up emotionally with fear and not let us love him and help him.  Afraid that he hates himself.  Afraid he will hurt himself.  Afraid he will hurt others.

Desperately, unspeakably afraid that someone will take him away from us, that someone will decide we just don't love him enough...

There is just so much fear.

We know he is a caring person.  He keeps the secret of the Tooth Fairy and Santa for his younger sister and children everywhere (even though he argues with her that fairies are not real).  He includes us in his daily story-telling as characters and in tat dialogue tells us that he loves us and understands our perspectives.  As always, he tries very hard to engage us in play.

While Autism looms largest, it is not the only fear.  Dyslexia is looming pretty large in our horizon.

We have allowed our fear that she will be taken advantage of to let us fall into that trap of saying the non-reader is lazy.  Our daughter is a loving person, aware of people's feelings, trying to figure out the universe in this skewed version she's landed in.  She loves movement, and struggles to hear and see like the rest of us.  She is teaching her brother invaluable lessons in bending to others, sharing space and time, and being family.  But we have hit a place where she is afraid she doesn't have what it takes, where she fear of the comparison that finds her lacking stifles her effort.  She copes with her people skills - she asks for help.  She acts helpless so that others will help her.

I am so very very tired of the fear.  My heart is starting to tell me that we have NOTHING FEAR EXCEPT FEAR ITSELF.  If we just play, if we just love them, won;t they know how fabulous they are? Won't they grow into the beauty we expect of them? Won't that really be all they really need?

It is easier for me on sunny days, but I am going to try REALLY, REALLY hard to just love them! to just PLAY with them! to just ENJOY MY CHILDREN.

I am going to set aside the workbooks and pressure.  I am going to LOVE them!

And I need your help reminding me of all this as we move forward.  I need you to remind me that loving people is more important than testing them, or molding them, or even teaching them.

And kudos to my parenting partner, to my husband, to their father, for helping me to rediscover the love in this journey on a constant basis.

Tuesday, December 9, 2014

Kids with Autism ARE hard

I have read a lot in the past year or so about how autism parents should not ever complain about autistic kids because it perpetuates this social expectation that autism is a burden and that diminished self esteem that autistic adults carry.

I cal Bull$h!t.

A family is ALL the people in it, trying to live together.  It is not and CAN not be about the whole family bending to accommodate one member.  It is NOT selfish of parents to expect to have some enjoyment out of life, or to ask children to adjust to them in some ways.  The argument that only the adults have to change because they are the ones old enough to have coping skills is ludicrous.  If we are going to point out that kids are allowed to have bad days, then we have to make space for adults to have bad days too.  And truthfully, the autism contributes to those bad days - both mine and my child's.

The latest 'fight" around here is staying involved in an organization.  My son is fighting being in cub scouts, and there is a fair share of unpleasant politics amongst both the boys and the parents.  Changing will be difficult, but seems pretty necessary... so we started a conversation to facilitate that change.

Reacting with inflexible black-and-white thinking, my son starts to scream and cry that he does not like people, that I am intentionally trying to cause him upset.  I remind him that he needs to have the opportunity to practice being with people, but more importantly he needs to give himself the opportunity to have friends.

But the rigidity takes hold, and he moves to that instinctive place where he wants to hurt back - so he does.  That rigidity combined with perfectionism (all parts of the OCD nature of Autism) to drive him to find as many hurtful things as he could say about me.  Now maybe all kids get mean and hurtful (certainly we have heard that excuse for the bullying done to my son) - but the extremity and thoroughness with which he finds the meanest thing to say is Autism.  He told me that I try to upset him on purpose (no I am trying to help you grow); he told me that I am ignoring how I hurt him (as a matter of fact, 90% of my waking day everyday is invested in managing your ability to deal with change).

Maybe it was my fault for returning the argument with specifics, but I tried to demonstrate to him in concrete ways that I HAVE cared for him - specifically pulling him out of a dangerous school situation, and removing those toxic people from his life.

His response was that I have removed every person except myself.

THAT is a low blow, my son.

I was hurt, and I reacted that way.  He deserves to know that he hurts others. Am I supposed to lie and pretend that he is allowed to say whatever the hell he wants, no matter how hurtful, because he can use his autism as an excuse?  In a job setting that would get him fired.  In a public place that could get him beat up or killed.  In a legal setting it could get him slander.  There ARE very real limits on how mean you can be.

So I asked him if he wanted a new mom.  I told him that if that's really what he wants, I can make that happen.  I am not rich enough to buy him a new mom, or even a nanny, but I can report to the state that I can't help him.  he could make statements in public about how I am out to get him and the CPS would take him to live in a home.  If he needs out of this house, there are options.

I started to cry, I reminded him that it was incredibly mean, I was working hard to control my voice, but I am sure that he heard my ... vigor.

SO then he tries to correct himself, and says he wants me as his mom, but that I am just not good enough.

THAT is low, low blow.

And here we are.  I am now supposed to suddenly and instantly ignore every ounce of parenting guilt that is built into this job, that is multiplied by the judgmental dirty looks in public, by the therapists who make it clear that success is built on your follow through at home, by the school system & sitters who have told me over and over that he only behaves badly for me.

That horrible feeling in the pit of my stomach starts, the nausea and disgust.  This is the feeling I had when I was fighting for my dignity in emotional abuse from my husband.  This is the sense of worthlessness, the place that took me to the brink of suicide on more than one occasion.  I am back to trying to convince the people around me and myself that I am worthy of sharing their air.

My son carries that kind of despair too. He threatens suicide on a weekly basis at this point, every time he gets corrected, or we ask him to learn to control himself, or i remind him that he is capable and responsible for thinking of how his actions affect others.

So is the answer REALLY that since I am the adult I am supposed to just live with and accept this type of emotional abuse?  Is it really that as the mom, as the woman, I am just supposed to allow him to be as mean as he wants - because he is disabled and can't control it?  This is the same type of bull$h!t that keeps women in relationships that get them killed.  This is why so many parents are pushed to idea that death is the only viable option.

If the child truthfully has absolutely no control over how much they hurt others, then putting them into that resident situation where people who are paid minimum wage and have no emotional charge to put up with that crap are responsible for his well-being is setting him up for a lifetime of physical abuse.

Somehow, we have to move forward from here.  Somehow we have to reach that place where he knows his needs, understands how to meet them, and takes responsibility for how he touches the lives of others.

If he can't take that responsibility, then he really can't ever live as an adult.

And if he is never an adult, at what point am I "allowed" to emotionally protect myself from that kind of abuse?