Finding it harder to communicate with her

[Peacemamalove]

Hi Everyone DD has aspergers she is 5 years old and recently it has been so hard communicating with her. She will go and hide if she feels overwhelmed , embarrassed etc. She has a really hard time at family gatherings. A few weeks ago we had a semi large family gathering there where at least 7 children acting loud and rambunctious it was very loud and DD just freaked out and went outside then no one knew where she went. I tried to explain that she was feeling overwhelmed and everyone looked at me like I was crazy and that I was just making it up.

I am looking for ways on how to get family to understand dd and ways that they can help her connect better.

If anyone has any thoughts I would love to know.

[SpottedFoxx]

It's so hard to get family to understand. I think it would be easier to just talk to your daughter about how to handle these situations (it's okay to go outside but please tell me first so I know you are safe). I'd sit her down when she is in a good place (not hiding, etc) and tell her that you are okay with her removing herself from hard situations but she needs to include you so you can keep her safe.

Actually, what your daughter is doing is great. She is self regulating. She is in a situation that makes her uncomfortable, unhappy, etc. and is doing what she needs to do to make herself feel better. It's an important skill. She just needs a little big of guidance.

As far as your family.... Are they receptive to these conversations? Would they read a book on aspergers (or a website) if you offered it? At the very least, I'd just tell them that crowds, loud noises, _______ (fill in the blank) are overwhelming and like nails on a chalk board for your daughter and they have to understand and respect her when she needs to remove herself from the situation.

[beachbaby]

I've been thinking about posting a similar thread for a while now. My DD is 4.5 and has SPD, anxiety, and articulation disorder...possible ASD but no dx yet. I feel like it's such a struggle to communicate with her over the simplest things...the repeptitive speech, getting stuck on negative experiences, the demanding tone....I feel like I have no tools left, yk?

One thing I've found that helps is to use a sensory activity to help jumpstart communication--either to break a negative cycle or to introduce a new concept. Not sure if that would help your DD, but thought I'd mention it.

My DD has a hard time with 'feeling embarrased' too. She can identify her feelings around it, which is good, but often complains of other people making her feel embarrased by paying too much attention to her. Interested to hear some specific strategies that might help.

I hope some other mamas chime in with more. Just wanted to let you know you're not alone.

[karika]

Are you already on the chemical free (no dyes, msg, processed foods, HFCS, etc) and GFCFSF diet? I hear it can really help with Asperger's. Many report increased communication after removing dairy and soy, sometimes within days. This is a yahoo group I belong to. It is very high volume and very informative. Many of the ppl on it have children on the spectrum. http://health.groups.yahoo.com/group/GFCFKids/

[SeekingBalance]

Similar situation

Hi there,

While my son does not have aspergers, he does have anxiety and exhibits those exact same behaviours in new or overwhelming social situations. Before I really understood what was happening with him, I really got frustrated and angry, like he was purposefully being difficult. I've come a long way (thankfully) and I think we're all doing better at supporting him.

I tell people in advance that he takes some time to warm up in social situations and that he will start by spending a bit of time on his own "acclimatizing" - and if I get puzzled looks I say, "We all know adults who are uncomfortable at parties... the ones that arrive late, that don't show at all, that hang out at the food table, who bury their nose in a book, who get drunk or hid in the kitchen wiping counters and loading the dishwasher. We accept that because we understand that everyone has a different comfort level. Our son needs that same understanding."

People have really responded well to this explanation... and we've had a lot of support - not that some people don't think it is odd sometimes, but they let him have his space and don't try to force themselves in him. He does warm up (usually) and in his own time will participate in social activities.

We have also learned not to stay too long. It is exhausting for him to be social so we don't push our luck and hope to party until the wee hours...

Hope this is a bit helpful.

Megan

[KimPM]

I totally understand how your DD feels, I used to do the exact same thing myself

I agree with the PP who said that it's a good thing, and just to have her let you know first before she goes running off. Maybe you could have a "safe" and quiet place in the house for her to hide, so she doesn't go running outside.

[LynnS6]

I think she's got a decent strategy going here.

How about adding some social stories about family gatherings -- how you know it's noisy and it's OK to be overwhelmed, but that she needs to let you know where she is?

Maybe, if you're not at home, you can find a place together where she can go to get away from the noise/stimulation. You might have to arrive early to scope the place out when it's not overwhelming.

The other thing to think about is to maybe have her be able to give you something (like 'break card') when she's overwhelmed. That can be a nice, non-verbal way for her to say "I'm taking a break". If she's really overloaded sensory-wise, she might not be able to tell you verbally that she needs to leave.

As for other family members, I'd just leave it at "She needs a break from the noise for a bit." In my family, that's not considered odd at all. We've got a number of us who are highly sensitive to noise.

You might also think about doing some preventative work so that you can help her take a break before she reaches the crisis point. Monitor how she's doing and model taking a break ask she starts to get overwhelmed.

At my niece's wedding last year, the church was unairconditioned and they had HUGE going fans before the wedding. The fans were really loud and obnoxious. Most people were hanging out near them waiting for pictures. I looked around and saw that my 2 kids were uncomfortable, and my nephew, who's got Aspergers was REALLY uncomfortable. He was retreating into his book of word find puzzles (a good coping strategy), but having a hard time. We left the main area and went up to the children's nursery where it was quiet. I told my brother to come find us when it was our turn. That made a huge difference my kids' (and my nephew's) ability to make it through the wedding. My nephew still did the word find puzzles, but he was able to regain his reserves by doing so. Similarly, during the reception, I took all 3 kids on a walk, away from the main din of the reception.

[StephandOwen]

I think she did a great job getting away from everything!

On another note.... ds has a "quiet spot" at home (his closet that has the floor cleared of everything except some pillows and soft things, it has glow in the dark stars and some little push lights so he can have as much/little light as he wants). When he gets overwhelmed/frustrated/sad/etc he goes here. I found a poster at a local homeschooling store about emotions. There are a bunch of different smily faces with different emotions (with the word for the emotion). I hung this on his closet door at his level. When he's had time to decompress I can go to the closet with him and he'll point (or say) what emotion he is/was feeling and that sometimes gets the conversation going. Other times I might suggest an emotion that he might be feeling and he will tell me yes or no to it. We don't visit family too often, but if we did and were having this issue I would consider getting another poster and cutting the individual emotions/smilies out and putting them either in a small photo album that he can bring with him and flip through or maybe use a hole puncher to punch a small hole in the corner of each emotion and put it on a key ring.

I also want to second (or third or forth!) the suggestion to really listen to her when she needs a break (which it sounds like you do). We've been at Disney World this week, which is overstimulation central. Today is our last day here. DP and I had planned on us (and ds) getting up early, getting to Magic Kingdom, spending the day there, having a nice dinner, spending the evening there and going back to the hotel after fireworks. Ha. Did. Not. Happen. We ended up getting to the park at about noon (ds wanted to sleep in and have a lazy morning). By 1:30 ds was asking to go back to the hotel. While park of me wanted to scream "WE JUST GOT HERE!" the bigger part of me realized he was using his words and telling me what he needed and I need to respect it. We went back to the hotel (where we are now). We'll probably try to go back after dinner for a couple hours when he's had a chance to calm down

[QueenOfTheMeadow]

I used to as a child and have found it necessary to do this as an adult at family gatherings sometimes. Funniest time was recently we had a big party at my parents. I eventually had to go hide in theirbamboo forest to get over my sensory overload. I walked in, found a my quiet spot, and my ds2 was already sitting there. He was afraid I was going to make him go back. But instead we stayed there for about 1/2 an hour and cuddled all in silence. He was happy to have quiet company, and it made him feel like there wasn't anything wrong with it.

So, when it comes to family, I'm very matter of fact about it. Honestly, if people don't or aren't going to understand that some people are really sensitive to sounds and situations that seem out of control, no amount of explaining is going to help. I just tell them that he needed some quiet time and leave it at that.

[SpottedFoxx]

Originally Posted by QueenOfTheMeadow

I used to as a child and have found it necessary to do this as an adult at family gatherings sometimes. Funniest time was recently we had a big party at my parents. I eventually had to go hide in theirbamboo forest to get over my sensory overload. I walked in, found a my quiet spot, and my ds2 was already sitting there. He was afraid I was going to make him go back. But instead we stayed there for about 1/2 an hour and cuddled all in silence. He was happy to have quiet company, and it made him feel like there wasn't anything wrong with it.

Oh my goodness, this made me tear up How sweet!

[Peacemamalove]

NAK- but wanted to quickly reply( will post more later)

Thank you all so much You have no idea how much your words and ideas have helped.

Today has been rough . DD has been acting out more than usual and decided to had a naked day ( she hates clothes) these types of days are hard on us cause I really can not go anywhere . I try everything I can think of but we usually just end up staying home.

Thanks everyone for making me not feel so alone.