5 Ways to Support the Newly Diagnosed

finding the path after diagnosis of autismI often think back to the day we got The Boy’s diagnosis.  The ex and I went our separate ways – he went back to work, and I drove to a nearby Kmart parking lot to process (i.e. cry my eyes out, hyperventilate, ask myself over and over “What are we going to do?” and eventually call a close friend to talk me through it.  Thank God for her.) The psychologist we had seen had written “Autism Society of America” on the back of a business card, suggested we look them up, and said goodbye.

Once I collected myself, I still didn’t know what I needed, or what our next steps were.  As I think most do, I went to the internet.  Unfortunately, the internet is a big place, and I’m not sure the right tools and support are readily accessible to someone doing their first post-diagnosis search.

So how can we support parents who are new to this whole kit and caboodle?

1.  Support local nonprofits that directly help our kiddos.  The more those groups are supported, the more visible they can be in the community, and the more likely it will be that someone hearing that diagnosis for the first time will recognize the group as a resource they can use.  This means supporting them with money, with attendance at events and workshops, and with your volunteer hours.  Yes, volunteer hours.  It may seem like we have the perfect excuse not to volunteer, but we have to give back if only to our own community – if we don’t, who will?

2.  Make your presence known at the school.  Kids with a new diagnosis will have parents with questions.  They will most likely be asking those questions at the school. If you have maintained a good relationship with staff while dealing with the school, they may just see you as a resource for parents who are new to this whole shindig, and may pass your name along.  Or if there is a group of you parents, even a social group, that goes for you, too.  Schools really do want to help, and may attempt to connect someone with questions to those who may have answers (that’s you!).

3.  Use social media to post “the good stuff” to your friends, and encourage them to share it.  Parents who have questions will inevitably be some of your friends, or friends of friends, and so on.  The more “the good stuff” gets shared and posted, the more people will see it, the more it will be found by those searching for it.  That’s how the interwebs works for good.

4.  When they come to your group, be welcoming.  You may think this goes without saying, but groups are a funny thing.  Sometimes, a group can get an attitude with newbies, and can be judgmental. You don’t have to like everyone who comes to the group for help and support, but the fact remains they need help (and they may need more help than others!).

5.  Respect the process.  People react differently to the news of a diagnosis.  Some will immediately seek out others for help, while others will remain private and need to sort through things on their own.  Don’t be pushy.  Allow them to come to terms with it, and just be a friend.  Just knowing there are others who are going through what you are going through goes a long way, especially at the beginning.

Special needs parents have many, many roles.  One of them should be “guide to others who have just joined the group.”  What would you add to this list?

There’s This Mom

I’ve joined an autism society group in our community, and made quick friends of the few that are the do-ers (every group has a few people who do everything, while the majority… well, don’t).  Recently we had a “support group” meeting, which has been more like a friendly get-together at someone’s house, and we also set up a group Halloween event so the kids could trick or treat in a friendly neighborhood.

These were the first encounters I had with one particular mom, who has a teenage daughter on the spectrum.  The daughter is incredibly sweet, but is overly demonstrative, which can make people uncomfortable.  Her mom reminded her that shaking hands is more appropriate than hugging people when you first meet them, but she continued to hug everyone, multiple times.  No big deal here, and it cam off as rather sweet.

Mom, however, also veered into inappropriateness at the meeting, describing her daughter’s voice as screeching and unbearable, and voicing many times how she would just like to get away from her.  Now these are things we all may have thought at one point to ourselves, but not voiced aloud.  In any case, I worried for her while she rubbed others the wrong way that evening.


Key, zebble

On Halloween night, things took a turn for the worse.  The daughter attempted to hug every person who gave her candy that evening, leaving the dads from the group (who had volunteered to take all of the kids out) at a loss for what to do, surreptitiously calling and texting their wives for advice.  The mom who had stayed behind with the other moms was oblivious, I think.  A group of kids (her daughter included) returned to hang out inside the house, while the moms continued to hang out on the porch, chatting and passing out candy.  While the daughter continued her inappropriate displays of affection, now centered on an 8th grade boy on the spectrum inside the house, the mom continued to make her bizarre and inappropriate statements on the porch.  At one point, the daughter went to change clothes, but found the car locked.  She called to her mom that the car was locked, and her mom yelled back for her to “come get the damn keys.”

The mom who was hosting us that night took note of that exchange, and also took note of the PDA happening in the house, because the 8th grader happened to be her son, and finally pulled the mom into the kitchen to discuss the behaviors we had all witnessed.  I’m not sure what happened in its entirety, but I know she did it with tact and care.  I believe the mom and the daughter left shortly after that.

Here’s where I get uncomfortable.  I completely support the hosting mom’s actions.  To ignore the behaviors would not help anyone.  And I firmly believe she did it in the right way.  But this mom clearly needs help and support, for her daughter’s sake if not for her own.  A mom voicing thoughts like that is very near a breaking point, I believe, and maybe it’s not within the realm of this group to help someone that has reached that point.  But maybe it is.  Maybe we do a disservice to her and those like her by being so informal in our approach, by assuming friendship with everyone.  We shouldn’t have to like her to help her.

What do you think?

Facebook Groups You Should Be Following

If you are a Facebook user, you may have already seen something about these groups.  If not, you may want to add them to your feed.

Everyone Matters, according to their page, is a “global Inclusiveness campaign w Sir Paul McCartney, Nicole Kidman, Ellen D., Hugh Jackman, orgs & public with a message to judge others less, see the humanity in everyone, and emphasize that everyone has the right to be who they are.”  They highlight real stories from real people from all walks of life, as well as the usual graphics and pictures.  I often “share” what they post, so that I, too, can spread a message of inclusiveness for everyone. (@everyonematters on twitter)

EM fb page

Autism Shines, according to their page, allows you to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them. Help us show the world all the positive attributes of autism!”  At first, I found the constant updates to my feed a tad excessive, but after awhile, I really grew to love the positive, beautiful pictures of children with autism from all over the world.  This page really puts a face (so many of them) to the label of “autism,” and it’s definitely not “Rain Man”. (@autismshines on twitter)

Single Mothers who have Children with Autism, is another page: “If you know or love someone with autism, have autism or just want to learn more about autism then you are welcome here. Follow us on twitter too at: www.twitter.com/SingleAutismMom”  I just started following this group, but I love that they share posts asking for advice.  They also share graphics with messages that jive with how I feel about autism in general, i.e. “Autism is not a choice, however Acceptance is.”

Finally, Shared Abilities is a new one for me, as well: “www.SharedAbilities.com is A Community for SHARING Information about Special Needs and Celebrating All We are ABLE to Accomplish!”  This is the Facebook page for a website with forums (fantastic resource for parents of kids with special needs!) and a newsletter.  They also post about various fundraisers and local opportunities all over the country. (@SharedAbilities on twitter)

You see, I use my Facebook page to share things that I think the people who care about me (and my son) ought to know, if they don’t already.  I love being a voice for people with autism, and indeed anyone seeking acceptance.  If others find that obnoxious, that’s their problem, and not mine.

I hope you check these pages out — I know they’re worth your time.