July 2012

Among the problems that parents [of autistic kids] identified, dealing with judgments from other adults ranked second only to dealing with their child’s behavioral problems.

from:  Parents of autistic kids say: Stop judging us – TODAYMoms.

I have written elsewhere on this blog about how hurtful that judgment and rejection is. Thank goodness awareness is rising, but obviously this is still a problem.


Does it ever get better?

I was reading through the comments and questions I get on this blog, and this is the question I see over and over again: does it get better? So I thought I would write about this a little, from my heart. Short answer: yes, it does get better–but I want to talk a bit about what “it” is, and what “better” looks and feels like.

What is “it”?

“It” is the sense of being overwhelmed: the exhaustion, the inadequacy, the fear, the frustration, the discouragement, the confusion–and at times, the bitterness and anger–of parenting children with autism, especially if they are also hyperactive, aggressive, and destructive.

The dread: What will happen today? The questions in the middle of the night: Why is this happening? Did I do something to cause this? The worry: Is he ever going to be able to a) go to school?  b) keep a job? c) keep out of jail or an institution? The sickness in the gut: What if he hurts himself or someone else? The hurt: Watching other children give their mothers love and affection. The shame: Meltdowns in public, the critical looks, the rejection by friends and sometimes family.

And often the worst of all: the daily annoyance and discouragement of having a child who hits, pinches, pokes, prods, cuts, tantrums, screams, who cannot sit still, who resists being touched, who does not respond to any form of discipline, and who makes every single apparently simple daily activity a struggle: eating, sleeping, bathing, teeth-brushing, getting dressed, getting undressed, using the bathroom.

If you have read with me this far, take heart: here comes the “better”:

What is “better”?

Better is believing your social worker when she says that you are doing a good job, that you are actually one hell of a good parent. Better is giving yourself permission to take care of yourself. Better is not being embarrassed when your child acts out in public. Better is finding ways to mitigate public shame (writing a blog, making up cards to hand out to strangers who don’t understand, writing letters to friends and family, finding a support group). Better is taking a day at a time. Better is educating yourself and advocating for your child. Better means forgiving yourself when you fail, but then getting back up and moving forward. Better is finding encouragement and joy in the little steps of improvement you see. Better means getting support for your family (including respite and counseling) without feeling shame or guilt. Better means making time and saving energy for your spouse and other children, without guilt. Better means avoiding people who put you down or criticize you, and finding friends who are sympathetic. Better means asking for help when you need it, and demanding help until you get it from recalcitrant social service providers. Better means finding one other parent of an autistic child and having social times. Better means un-apologetically arranging family holidays and activities in ways that make it easier for your child to cope, and avoiding family members who can’t or won’t adapt. Better means having hope that everything you are doing will, in the long run, make your child more able to adapt, to cope, to grow. Better means finally coming to a place of trust that there is a purpose in all of this. Better means finding one thing in your life that is about yourself so that your identity is not defined just by being the mom of an autistic kid. Better means refusing to let fear or shame control your life. Better is even realizing that you may have to call the police if your child is large and aggressive. The way our screwed up mental-health system works (in the U.S.), often you have to get law enforcement involved in order to make a case for residential treatment, or to get social support services. There is no shame in that, even though it is really really hard to do.

How do you get from “It” to “Better”?

One day at a time. Know what to expect. Breathe. Pace yourself. Accept that what looks like just getting through the day may be a triumph. Educate yourself and advocate for your child. Know that your efforts are having an effect, it just takes a long time to see. Accept that your life is not going to be like one without autistic kids. Give yourself grace. Refuse to be ashamed of yourself or your child no matter what other people think or say. Find one area of your life (a hobby, an interest) that you are going to pursue so that your identity is not just being the parent of an autistic child. Be mad at God if you want–He’s  big enough to handle it–but tell Him so, don’t hold it in. Pray. Meditate. Get counseling, use respite, without shame or guilt. When you find an activity or technique that works, go with it–but be aware that eventually he will change and you’ll have to find a different one. Try to laugh every day (watch a funny TV show or read a funny book). Take photos and try to enjoy the little things. Trust that your child also wants to succeed at life and that together you can find the way for him to do that (it may just look really different than it might for others). Try not to worry about tomorrow, but yet prepare for it.

Know that you are amazing, not a failure, and that your child is lucky to have you as his parent!!

This doesn’t really answer my question. What I mean is, will HE get better?

Behavioral therapies of various kinds certainly improve the outlook; so does physical therapy and sensory integration therapy for certain cases. Having a loving and stable family helps, like it would for any kid. Finding activities that he enjoys and is good at also helps. Good planning and assessment during schooling is crucial, so that he has the skills he needs to manage life at whatever level he is able. If by “better” you mean completely “normal”: some high-functioning kids manage to go to college, hold jobs, marry, and have a family.  Rob has taken some college classes, held some jobs, had a few girlfriends. He has had trouble passing those classes, keeping those jobs, and keeping girlfriends. He is still living at home. But he is still growing. We see improvement in self-regulation, in reliability, in motivation.  According to the 2/3 rule, he is about 15. You have to remember that they continue to grow and mature well into their thirties. It is hard to say, but one thing you know: today is the only thing you can do anything about. So today, give it your best shot.