Autism Q -- She's not having "fun"

[ecki]

I took my kids to the zoo yesterday. I have no idea if Kayla even cared. She has that same expressionless face unless she's REALLY angry or happy. Otherwise, it's just blank. She spent nearly the whole time in her stroller waving her fingers in front of her face. She didn't even LOOK at the animals, or the shows, or ANYTHING. When I tried to take her out of the stroller she either cried hysterically or ate dirt. When I put her on the rides she just had that same blank face. And it wasn't even busy, so it wasn't even due to sensory overload.

I love taking the kids out to all those touristy type places in the summer -- zoos, fairs, amusement parks. But I'm so frustrated that Kayla doesn't seem to be having "fun". There was a preschool class on a field trip at the zoo and all those kids were so excited about everything. She just doesn't seem to care about anything. She would be perfectly content spending the whole summer in the living room with her musical flashing toys.

I'm beginning to become a bit apprehensive about taking her to Disney. I feel like I'd just be dragging her along for the trip like luggage.

 

[Earstou]

I don't remember how old Kayla is, but I remember having similar thoughts with my ds, who is mild aspergers, when he was very young. I remember thinking at times, why do I bother, he doesn't get anything out of it. But those were my low points, when I was at MY most frustrated. I know he learned a lot from our outings, just that he didn't show it at the time. Also, YOU need the outings for your mental health. You need to be at YOUR best to care for Kayla.
Continue taking her out and widening her horizons. Take her to WDW, you may be pleasantly surprised. At least you will know, one way or the other, if you do take her. If you don't take her, you'll never know.

 

[J'aime Paris]

Sorry you are frustrated today.
If your dd is anything like the autisic boy I work with, she probably saw and heard it all. My little friend rarely looks in the right direction or seems interested, yet he absorbs it all!
Keep exposing her to everything! And keep your Disney plans. The WDW can do wonders for kids and their mom too!

 

[alizesmom]

Hugs to you. You're doing the right thing even if you don't see results. Karen

 

[Luv Bunnies]

There are autistic kids in my class and we sometimes think they're not paying any attention to anything we do. We do some of the same material over and over at circle time and they seem to ignore it and want to just sit and do their own thing. But, suddenly a child will respond to a question that he never seemed to hear before. He'll sing a song that we've played over and over. He does something he's never done before, apparently because he saw the other children doing it. And we thought he wasn't even watching. We've come to learn that these kids are soaking up the environment around them all the time. They may not even look in the direction you want them to look and they may never change their expression. But they're getting it, nonetheless. They'll surprise you with it when you least expect it.

Keep taking Kayla to the places where you want to go. She will learn and enjoy and experience everything. She just may not show it right away!

 

[ireland_nicole]

go for your whole family, of which she is a part.
nicole

 

[bookwormde]

I am quite sure that she was “taking it all in”, and when you took her out you were “disturbing” the world she was in. Even at my age and level of intellectual social skills I have to “remind” myself to outwardly show the feelings and emotions I am experiencing inside. It sure sounds like if she was not having “fun” she is perfectly capable of showing you. The visual template you are supplying her is the most enjoyable thing for her, I know it is a hard thing for understand and accept as a mother but communication of emotions is a social “convention” which is learned intellectually over time. When there is a practical need and an immediate feedback response the skill is learned at a young age (like frustration). Since she loves you and feels loved and feels safe and provide for what is the need to show the emotions to demonstrate this. With time an experience these things will come, please be patient (at least this is what I keep telling my wife, ha ha)

I do not know if this helps at all but do not be apprehensive about WDW it is the best experience possible for her, it adds to her world in her mind immensely. Just because she is in her room with the comfortable stims, that does not mean that is where here mind is, it is exploring and enjoying the visual experiences, which she has cataloged.

Hang in there

bookwormde

 

[minkydog]

I can't remember exactly how old Kayla is(4 maybe?) but I sure remember how it was when Christian was younger. He was not responsive to anything. Just laid there and stared. No feedback. Christian never smiled until he was 17 months old. He was over 5 before he ever made eye contact with me. Even when he started school and well into his second year Christian much preferred to company of his twiddly fingers (I can *so* relate). but I just knew he was in there, somewhere. Even though he kept pulling back, I kept pushing in on him. I just had to assume that somehow, someway, something would eventually get through.

Well, it took 7 long years but it happened. there was no miraculous breakthrough. No specific therapy. just a lot of repeated actions. Swimming, horse therapy, walking, camping. We have taken Christian everywhere, whether he responded or not. He is 13 now and very responsive, very loving toward people. He is still much less interested in *things* and he still cannot look at stuff straight-on. He still does not talk, but he can certainly let you know what he likes and doesn't like. He has a great quirky personality!

Hang in there. Keep pushing, even though it seems like you're not getting through. You are. You are. I promise. Nothing is ever a wasted action. Try not to compare Kayla to other preschoolers. Compare Kayla to Kayla. She is unique and she's going to learn in her own good time. Keep pushing. I promise, it will be better eventually.

 

[SueM in MN]

Compare Kayla to Kayla. She is unique and she's going to learn in her own good time. Keep pushing. I promise, it will be better eventually.

good advice for everyone for their child

 

[XYSRUS]

Oh-I totally understand your frustration and questioning yourself. First and foremost, take the trip to Disney. I truly is a magical place, even for our autistics kids and for the family's souls. Secondly, keep going places with your daughter, and keep going. My son was the same way. We used to take 2 cars everywhere in case K had a meltdown and had to leave-even restaurants, parties, Christmas, mass, everywhere. I agree with a PP, they do take it all in. I am convinced. K. now talks (he's 11) about things he did when he was 3 and 4, screaming and crying in terror and overload under a chair and nonverbal. Never give up. I know that pain and frustration you feel today, you are not alone.

 

[lucigo]

I know how frustrating it is to want to see the joy on your child's face at the zoo only to find they don't seem to care. The first time I took Ben he was only interested in walking on the uneven surfaces and didn't even care to look at the animals. But somewhere along the way it clicked and eventually he was able to "see" more of what we were seeing - of course we still have a long way to go, but I think the repetition helps them to come out of their shell and experience more and more.

Ben has been on 8 cruises...not because I thought it did much for him, and sometimes I have felt like he was luggage, but I couldn't leave him at home because I would have worried too much about him and because I couldn't live without him for 5 days! LOL Whatever toy phase we were in he had that with him the entire time and mostly ran them in front of his eyes (a thomas train, a lightning mcqueen, a marble, etc). But as we have kept going something clicked and I will NEVER forget the port day we stayed on the ship while everyone else got off, it was just the 2 of us and we went up to the front of the ship - we were the only ones there and he started telling me all about it...water! cruise ship! lifesaver!

One of the biggest reasons I'm such a big vacation addict is because vacation gives me a chance to get away from therapies and just be mom and let him just be a boy. Its SO hard for moms to get in the floor and play with our kid and not have an agenda - but when we are on vacation I really try my hardest to just enjoy without expectations.

Ok I kinda got off on a tangent...keep going to the zoo, keep going to disney, go without expectations and enjoy ever little bit of it!

 

[KirstenB]

We had a similar experience on our trip to WDW. We just returned yesterday. Zoe is almost 3, and we stayed at AKV for 5 nights. We went to Universal, and watched the Barney show. She likes the TV show, so I thought she'd love the live show. Nope---throughout this show, other shows, and most rides she looked pretty expressionless. She loved the teacups, or anything else fast/intense, however.

Sometimes I can't read her, and this trip was one of those times. If I had to guess, she might have been a little overstimulated, but she didn't put her hands over her ears or eyes, or cry. By the second day, I just decided to stop trying to enjoy the trip through her eyes. I decided to just enjoy it with my husband and our older daughter. I had really hoped she'd enjoy it, but maybe next time. She loves the rides at Busch Gardens here at home. Maybe our next trip to Orlando, she'll remember some things from this trip, so it will feel more familiar.

 

[1stluvispooh]

I have so been in your situation. When DD was 4 I had to put her into the stroller to go anywhere. I mean she went into the stroller to go the the gym child care and stayed there. This upset other mothers, and some would try to get her out and she would scream. I even had the head of the child care say that since this upsets other people you need to come on off peak hours. Like what my child does as long as it doesn't hurt other people what business is it of yours? Sorry off on a rant. I do want to tell you that things do get better. Now I know for my child things got sooooooooooo much better when we put her on GF/CF diet. She gives eye contact and is much more with us. I know some people it doesn't work for and some people are opposed to it. All I can say is it helped my child and if you haven't tried it yet you might want to give it a try. And yes it take work and commitment on your part, and I know you have a lot on your plate already, but for me it was well worth it.

 

[Brer Shay]

First off - lots of hugs to you.

Second, keep doing what you're doing. As long as Kayla isn't showing great displeasure, you don't know what she is thinking/feeling. As long as it isn't a bad reaction, consider that she is enjoying herself, just not the way other kids express it.

I've been there with my son, and still am at times. Although I know that he sees and expereinces the world differently than the rest of our family, I still have to remind myself of it many times. When he was younger, most of his expereinces just got that blank look. I specifically remember taking him to the zoo when he was 5 and the thing we was fascinated with all day were shoelaces. It wasn't until the next summer, nearly a year later, that he talked about having been at the zoo and what his favorite animal was that day. Who knew he'd even noticed them, let alone like anything? I've had many instances like that with him. No doubt at times, however, he was just luggage along for the ride. My point is that you don't know what she is or isn't getting.

You also have yourself and other family to look after, spend time with and enjoy. As long as the things you do don't upset/frighten Kayla, don't stress over how she responds to it. As for Disney - go in with the thought that she will be luggage and be pleasantly surprised when she responds to anything.

I really hope you enjoy the trip with the rest of your family! It should be magic for everyone, including you!

 

[swimlib]

My mother spent most of my childhood making sure my sister experienced everything, even if she didn't express like or dislike. As time has progressed though, the likes have started to come out. She gets upset if the baseball game is changed off the TV, but will pretend to sleep when football is on. She will reach out and grab things with her nondominant hand if she enjoys the sensory (this includes the cat that wanders too close during stretching time).

All I can say is that although it may not seem to be making a difference to her now, as her mind matures a little more you may start to see the result of all the work you have put in.

 

[Linnie The Pooh]

It is frustrating. Just keep trying and doing things. Remember that even though she doesn't communicate like other people do, she's feeling things and taking the in. I'm always in awe of how much my son understands even though he doesn't always show it.

 

[polineedyan]

yknow, my youngest was different than the others..i often wondered if there wasnt something wrong, so we had her tested. She had a speech delay. Anyway the teachers all told me the same thing. It can be frustrating when they cant SHOW you what the see or want, etc. But believe you me, they get it. My daughter just sat and stared in class..then once home, she would sing entire songs from her class, that only an hour ago was like a corpse listening to her teacher. They DO get it. Even if they cant show you. Now, in your specefic situation, maybe sometimes she doesnt get it. Because, thats what the illness is. She gets whatever interests her. I dont even call that an illness in my book. I mean i know it is, but..just let her be her and you be you..

 

[belle&beast]

I'm pretty sure that you had said Kayla is using an ABA program which is a great program. In our district we also recommend using a play based program to help with social issues and the flat affect that often comes with autism. Look into Stanley Greenspan's floor time and Solomon's play based therapy. We are seeing wonderful results in both speech and a huge increase in social connections.

 

[lucigo]

I'm pretty sure that you had said Kayla is using an ABA program which is a great program. In our district we also recommend using a play based program to help with social issues and the flat affect that often comes with autism. Look into Stanley Greenspan's floor time and Solomon's play based therapy. We are seeing wonderful results in both speech and a huge increase in social connections.

I have to agree this has been a huge success for us. I have 3 older kids and in the beginning I drafted everyone in the house into 20 min sessions a day of play with our little guy. It helped them bond to him and helped bring them out. They have all become awesome mini-therapists for him. We now do what we call pool-therapy, about an hour a night of just mom, dad and DS in the pool together (just one of those 18f x 4f wal-mart ones). The interaction is amazing.

Another thing that has helped us immensely is video modeling. Before he was old enough to sit in front of the TV for very long we turned them on in the van. By age 4 he was asking to watch his "friends" videos. We recently bought a cheap digital video camera and he watches short clips of interactions we make and then mimics them in appropriate situations.

 

[ecki]

The private school I'm trying to get Kayla in to for Kindy is more of a Greenspan based philosophy. We aren't doing a strict ABA program right now, just incorporating Discrete Trials in her day. And she absolutely HATES it. She'll do the work, but most of the time it's through tears and lately she's been exhibiting self-injurious behavior when it's time for DTT. She scratched her neck until it bled and bit her aide. I'm wondering if a Greenspan based approach would work better for her. Yes, she IS learning skills with DTT, but it pains me to see her so resistant to it.