Monday, March 11, 2013

What's your story?

I'm trying to do a little background research to figure out how much of my experience is shared by other parents of kids on the spectrum.  So, if you're a parent of a child who has difficulty with pragamatic language - using language with comfort and fluidity in social situations - and you're willing to share your story (and possibly be quoted elsewhere), can you leave a comment and tell me about any of the following:

Social situations you've attempted with your child and how they've played out;

Social situations you've avoided because the challenge feels too great;

Social successes your child has had;

Things you do with your child to prepare him/her for social situations.

Thanks in advance, friends.  And for those who have asked - yes, once this article is out, I will definitely post a link.  In the meantime, maybe we'll all find some wisdom we can use (or at least the reassurance of a few good "me too"s) in the comment section.


Anonymous said...

I gave up trying to organize play dates a long time ago, even though I feel like I should be pushing my son more. They are just too hard on both of us. I've been trying to convince myself that practicing social interaction in naturally occurring settings is enough and that making him be with a child he doesn't want to be with is not really going to help. But I don't know. Maybe I'm just trying to make excuses.

nicki said...

Social situations you've attempted with your child and how they've played out;
Well most recent I can remember is attempting a family gathering at Xmas. We had prepared for the situation, said when we would arrive leave, who would be there etc...a few more than intended were there when we arrived :o The result was a full meltdown I'm afraid :(

Social situations you've avoided because the challenge feels too great;
I always avoid shopping because i find it all too stressful shopping with my children. I do it while they are at school & holidays all shopping is done online.

Social successes your child has had;
They have managed to make a few friends & keep them throughout school which is quite a big deal as it is difficult for them to fit in

Things you do with your child to prepare him/her for social situations.
I always tell them in advance if we are going anywhere, what time we will be going & leaving & 15 minutes from the time we are going/leaving I always tell them at 5 minute intervals how long they have left to avoid meltdowns even though they are now teenagers. I try not to do anything on the spur of a moment as it is too stressful for all of us. I always find out who will be anywhere that is a social gathering, if there will be music etc so they know what to expect before arriving

Mark said...

Where to begin?
We try to have as many social events and gatherings as possible in our home so our son has a refuge when he gets overwhelmed. He is always much more able to tolerate a large group in his environment.

When we went to Disneyworld we knew it would be sensory overload for him so we made sure that my wife and I both had a selection of his favorite Robert Munsch Books on our phones. With a good set of headphones he was able to tune in to his own world and avoid the distractions that were causing him anxiety. The late night electric light parade was a prime example. He sat on the sidewalk, listened to his books and was perfectly happy with the world going by around him.
Getting used to the looks, and sometimes, comments about why he might be wearing headphones in social situations was difficult but I would much rather explain that than explain why we have to leave a social event.

Margie (Speaking on the Spectrum) said...

I avoid a lot of things for my kids' sake. We don't do playdates (change in scenery, unfamiliarity with new toys/people), we don't go to playgrounds (noise sensitivities), we don't go to grocery stores or even the toy store (sensory overload). My kids can't communicate effectively at all, unless you count screaming, then they communicate really well. While we've been working on pragmatic speech and expression, it has been very, very slow, especially for my daughter. One of the few places we take the kids is the aquarium. It's indoors so there are no issues with weather (wind is a big issue), and we make sure to arrive as soon as they open to avoid large crowds.

TC said...

I have so much to say, but a crazy-busy day. If you don't hear from me in these comments in the next day or so, would you drop me a note at ihavethings at gmail dot com to remind me? My 12-year-old scored at something like the .1 (POINT one) percentile in various pragmatic language tasks on his last triennial evaluation, which was in November. And my last week was made hellish by trying to deal with the fallout of his pragmatic language issues (including accusations made against him which he referred to as people telling 'secrets' about him when he meant 'lies,' and his recalling events as if they happened yesterday when they happened a year ago, because his language is missing key time elements). Hard stuff. Especially when it seems, listening to him, that he's making perfect sense. Until, of course, he's not.

Melissa said...

The situations have changed quite a bit since he was small. At age five we would attempt a birthday party, full on meltdown, no matter the preparation. At 16; able to go, with a script ready. Social situations we've avoided: Grocery stores. The combination of loud, smells, cold, etc was just too much. Plus the earmuffs, sunglasses and double seat belt only worked so well. Now; he can go but must be told ahead of time what we will be buying. Otherwise will melt down at being told no. Social successes he's had. Not so many at a young age, but he is getting more confident ordering food from the deli etc. Things we do to prepare for a new situation: Time we will be attending, what the schedule is, expected outcome etc. If he can leave early or not. Think that about covers it.

Jessica Bialowas said...

We do a lot of social stories, but try to keep it vague so that if everything isn't exactly as practiced the meltdown isn't AS big.

I've been working with him on memorizing scripts - i.e. if someone says "Oh no!" you can say "What's wrong?" It makes him sound more natural and other children seem more accepting.

At school he has 10 minutes of social time each day. The teachers choose a friend for him to work with having a conversation.

Honestly, his biggest success has been on a horse. My quiet child who will go hours without talking, especially to new people in new situations, will talk confidently to anyone while on a horse. At his first therapy session I almost started crying because the change in him was so instant and complete. He seemed... normal. (I hate that word.)

Jess said...

My son has been working with a skills therapist on how to make and keep friends. He starts group in a few weeks. That's all great and everything, but honestly, I think the best thing we've done is to just GO.

We go to the uncomfortable places. We talk it through beforehand. We find a quiet space if we need to. We leave if it gets too overwhelming. He knows we can leave and no one will blame him or be disappointed.

I think the reason he's so successful now is that we kept going. We kept doing it, no matter how difficult. I'm not sure he could verbalize this now, but I think someday he'd say he's happy we did. Because we have had a few successful birthday parties and a recent super-fun trip to the science museum on a busy Saturday. And he had a blast every time.

It's really hard to power through during a difficult outing or social situation, but just like with other kids and other skills, I really believe that practice makes perfect!

Larisa said...

My son is only 6 but I have definitely noticed an evolution in his reactions. Birthday parties, particularly large ones, were impossible when he was 2 or 3 (he would sign "Mom - car - bye" as soon as we got there); however, he didn't really know the people or have any interest in being at these gatherings since the hosts were my friends. At 5 and 6, he's been able to go to classmates' parties with about a dozen kids there for up to 2 hours, though he may be off by himself for part of that time, doing his own thing. I think a really large gathering would still be too much. And I'm not yet comfortable dropping him off--I always stick around just in case.

Individual playdates go well most of the time, particularly if they are limited to an hour or so. I've learned to recognize the signs of trouble coming but have not learned how to politely ask guests to leave before the meltdown occurs. We don't get many invitations and he doesn't yet have consistent close friends.

Our main speech-related problem now is irrelevant conversation. He is obsessed with cars and will address a friend/guest by name and then launch into some story about a race car he drove in a video game. Yesterday when we were at the library with friends I tried to steer his conversation around to a different topic (a chess tournament he participated in) but within 2 minutes, he was back to talking about cars.

Rooster's Mom said...

We take my son (and NT daughter) to the park, and he introduces himself to strangers as a wizard. One day, though, he did that to a pretty blond girl, also around 9, and she said, "ME, TOO!!!" They bonded and bonded. We tried to find her parent to set up a play date, but the girl was there with a friend and the friend's mom. The friend didn't like all the spectrum style our boy was flaunting. The supervising mom took our information to give wizard girl's mom. Wizard girl's mom grudgingly got in touch once, but was having none of it. She didn't like the sound of us. Deep sigh.

To prepare for social situations, we practice scripts. We did two years of ABA, three years of social skills classes, and a social skills workshop through a university nearby, plus a "Kids Like Me" summer program. If there is another good idea out there, please let us know. We struggle mightily with socialization.

Anonymous said...

My five year old son was just recently diagnosed with autism. I have long struggled with social anxiety and panic attacks so I am not great at attempting play dates or even helping my son approach other children at places like the library, park, playground. But we go to all of these places, uncormfortable as it is for both of us. When he is approached by other children he wrings his hands and grimaces, but if I don't panic and can manage to relax, he usually will engage somewhat with the other child and he will probably want to stick around more than I do for said social encounter. It is an awkward social encounter with him using strange body movements and perhaps talking about something that may seem odd to the other child, but I try to see these encounters as helpful and encouraging in the long run.

Anonymous said...

My son is only 2 1/2 but we already plan for meltdowns during social outings and then we are pleasantly surprised if he does well.
Challenges: going into a new building, he is fearful of doctors and worried that new places are a drs office. He just had an epic meltdown at the school district building...on the bright side, they now know why he needs to be allowed to visit preschool several times before actually attending :)
Things we avoid: we don't go to dad's sporting events because he is fearful of the buzzers and whistles and he also runs away in open environments.
Successes: being able to grocery shop...he has developed a great 'mean face' (since he doesnt have speech) to let people know he doesn't feel like interacting
Preparations: we always let him know before bed if he has therapy or school the next day so he isn't surprised in the morning, we also assure him that we will come back to get him when we leave him somewhere or we tell him that we will stay with him if we go to a realities or friends house, that way he doesn't feel anxious wondering if he will be alone there.

Kate said...

Sometimes I worry about what my son may say or do, so occasionally he skips a big social event. One of my best friends recently lost her 8 year old daughter to cancer. As we prepared to attend the memorial service I worried whether or not my son should go. At the most horrific time in my friend's life I didn't need my son to say or do something inappropriate. My husband and I both agreed that some things he must do. This was one such time.

I explained to him that typically you hug the family and tell them you are sorry. I explained that we may have to wait in a long line and he couldn't complain. He assured me he was NOT hugging or speaking to anyone. I told him that was absolutely fine.

When it was finally our turn after waiting most of an hour, my girlfriend and I hugged and sobbed together for a very long time. When we finally separated, there stood my boy, tears streaming down his face and he literally fell into my friend's arms and held her tight. He then proceeded to cry and hug all 10 family members who stood in front of the casket. It was painful, but healing for him.

And to think I almost let him stay home. My son, in such a heartbreakingly sad moment, acted as appropriate as every other neurotypical child and adult in that room. What a lesson to me.


MOM-NOS said...

Thank you all so much! And TC, it sounds like things are beyond hectic, so please don't worry about it. I've got plenty to work with. But thanks!

Beth Up North said...

When my son was 2 and 3 we had to have stand in children open his presents at his birthday parties because A) he had no interest in new things and B) by that point in the festivities he was hiding out in his room with a guardian, quietly engaged in stimming. We avoided most other children's parties until about age 4 when we began experimenting- always ready to bolt out the door. Things have progressed nicely since then, and I credit Pivotal Response Treatments with the majority of our success. He is now invited to may birthday parties, and participates fully in his own way. He may not play all the games, but he will hang out, and be an "announcer" for all the action. There is too much to put here about how we got to this point, but I do have a blog that goes back a few years and charts much of our progress.

I love the phrase "pragmatic language" and it is new to me. It is a prefect descriptor of that challenge area. I also love the idea of "appreciative living", it looks like the best way to overcome challenges in life and a new way to get at the "strengths perspective" (a social work concept).

Our ASD kiddos deserve the best. They work so hard, and life has so many different challenges for them. Thank you so much for putting this blog out there. Your perspective is great to see, and I'm glad to read your new postings.

Beth and Alex

Alana said...

Well, for me, my parents never really bothered all that much to set up playdates. But I was also really really lucky and had a sister almost the same age, so I wasn't ever lonely (even though I never talked to people). We also didn't really go to many non-family birthday parties (really ever... I was going to say high school, but then I realized that wasn't really true, either.)

And I wouldn't talk in public most of the time and most people couldn't understand me (I made my sister order for me at restaurants until I was a teenager). We just generally avoided loud places. (I think it helped that my parents are into activities like gardening or hiking so they could still do the things they loved, since those were all me-friendly.)