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?

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Posting Embarrassing Stuff About Our Kids on the Spectrum

So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

Disability and Celebrity

I’m sure you have seen the videos that have been popping up, slightly more frequently in recent years: some student with a disability making an amazing shot in basketball, because the coach told him to suit up for the last game of the season, or the boy with autism who was voted Homecoming King, or the many others that are out there.  You can often hear the crowd chanting the person’s name, and screaming wildly when the shot is made, or the name is announced.

My kid is a bit of a celebrity at his school.  Everyone seems to know his name: students, parents, even kids who are older and in middle school who live  in the neighborhood.  We go somewhere in town, and someone says hi to him and calls him by name, and I have no idea who it is, and many times, neither does he.  He’s a celebrity, partly because they have such good programs to “initiate” the general ed kids into what their ASD classmates are experiencing, and I think partly because he’s a “6th year” student at his school, having attended the same school all the way through elementary.  The longer you stay in one place, the more people with whom you come in contact.  That’s my theory, anyway.

But, I watch these videos, and I wonder.  I wonder if this “celebrity” is an entirely good thing.  I wonder if it would be even better if there was no news story, because it would be a matter of course for someone with a disability to win Homecoming King.  It would be a matter of course for kids with disabilities to compete in sports, perform in music programs, do whatever it is that typical kids do, and do it well.  And it would be a matter of course for our kids to have friends, rather than fans.

Until that day, I will continue to share these videos and spread the hope that they bring, because they do leave me hopeful, if not entirely satisfied.  I am always proud of the person in question, but I am so hopeful for those kids who are “fans” of the person in question.  I am hopeful that someday (if they haven’t already), they will realize that this person is real, and not a character.  A potential friend, rather than a celebrity.