A cold slap of reality

[tacomaranch]

Hi friends,

I don't want to do a full trip report right now but did want to share what happen to me last nite at Ohanas

In my reality my son doesn't seem very badly. We live in a very small town and very little socialization other than his developmental preschool.

Dinner was the usual, DS being squirmy, wanting to play, me trying to get him to stay as settled as possible. When it came time for the games I was thrilled that he could get up and move around.

That is when my cold slap hit hard. Every other child was up there by themselves and parents were at the side snapping pictures. Not us. I had to be right there and explain to him what to do and guide him. He could not just take a shaker, he had to talk the guy and then try to hand out shakers to each child. It was very nice but he was the only child that wanted to help out. Then he followed in the line, with me of course but when I asked him to follow the little girl in the blue dress down, 25 feet and back, he went down and disappeared! The kids came around but he went the other way. Just like that he was gone!

In a panic minute I could not see him but then there was a slam into my bum and there was DS.

We tried one more time with the limbo dance and it also was tragic with the same terrible things happening but just a different version.

I went back to the table in tears! and could not sobbing. My cold slap was that my reality is a fake. My son has autism in a horrible way and he is not even close to being able to function in NT world with NT kids.

I don't see this because we don't go out, we don't have neighbors, we don't have play dates. I live in a fake world with my own reality of how my son is.

It took going out and seeing our DS with other children to see how far off my reality is.

I am still in tears and shaken to the core but life will go on and soon we will be back home. I don't think I will go back to Ohanas anytime soon.

Blessing to you, April

 

[Haley Whippet]

Deb

 

[Earstou]

You don't say how old your ds is, but it was a few years before I let my ds out of my sight and reach. He would disappear in a heartbeat, with never a look back. Plus I never knew how he would respond to other people.

I can tell you that things have greatly improved for us! Now a young teen, most adults can't tell there is anything different about him. Granted, he is still challenged socially, but I can send him away to camp for a week, and know he will be just fine! Sure beats never leaving his side AT ALL the first 4 years of his life (except for that one time we used a babysitter, and he crayoned the new sofa and wall!).

 

[MarieS]

I am sorry to hear you were upset by this. My son isn't autistic, but he does have sensory and behavior issues on top of his CP. What has helped is exposing him to lots of experiences and to just keep trying. He needs lots of exposure to learn what is expected of him. I or my sitter has to help him to participate in activities. ( I seldom get to sit in the stands at challenger baseball). When we started challenger baseball two years ago, he cried almost the whole time and acted out. Things have gradually become easier though and this year has been the best yet.
Hope the rest of your trip was better!

 

[solferino]

I'm so sorry it was difficult for you.

 

[freckles and boo]

I am so sorry. I absolutely hate this smilie but I want to send you a hug. Having an autistic kid is like riding a huge rollercoaster - sometimes the dips catch you off-guard. I have moments when I think "she is doing SO WELL!!!!" and really, she is doing well. But then you see the other kids doing better, behaving much more naturally, needing less guidance. My girl is a runner, too. She will bolt and zig when we think she will zag. She looks like a regular kid but she is anything but normal. It does hurt when you realize that they are so different and that they will always be different. But that doesn't mean they won't be successful.

I have to run, but I wanted to tell you that you aren't alone.

 

[AJKMOM]

My cold slap of reality occurred about 12 years ago when I read on a medical report that the pediatrician called my son "severely autistic". I guess I never saw it like that in writing before.

Now, at age 18, he is "moderately autistic with OCD". Neither one is a piece of cake.

For what it's worth, we always felt he improved after every trip to WDW, he's been 13 times.

 

[XYSRUS]

Wow-There is that time for all of all...and yeah, it's a giant slap in the face that sometimes takes a a while to recover from. Accentuate the positive and never give up!

 

[KirstenB]

I'm so very sorry. FWIW, when I substitute taught in special ed (long term, so I saw him everyday for several months), there was a boy, a second grader who was autistic. He had the same aide since preschool. By the second grade, he was verbal, able to go to the bathroom by himself, able to mainstream in most classes, and could follow directions without any inappropriate running, stimming or anything. He had none of those skills as a kindergartener. His aide had said she couldn't believe he was the same kid she'd worked with since preschool. I hope your son also gets to keep moving forward.

Our 21 mth old younger dd has just been diagnosed with HFA. I'd guess we'll experience moments like you did, and just do the best we can.

 

[mrzrich]

April,

I too have felt that slap. Some of our worst incidents have occured at family functions with all the perfect cousins being well behaved and my DS7 Climbing up Grandma's bookshelf for something shiny.

My son is also a runner. The scariest incident happened when he took off in the dark down Main Street in the MK. When we finally found him he was headed toward the castle. He said "To watch the fireworks" No fear, no sense of being lost. I cried for a week, and I still have fears.

Sometimes you will see my son at WDW with a tether on hs belt loop. Yes there are sometimes looks. I used to worry about him being embarassed about it, but then one day I realized it wasn't him that was embarassed it was me.

I don't know if any of this makes you feel any better. I just wanted you to know that you are not alone.

 

[robin09]

Just a great big hug from someone that's been there and still there. DD8 has asperger's, ocd, adhd.... When she's alone with me, doesn't really stand out, I think of her as "Normal". But put her with a group of kids her age, she stands right out as that annoying child. She will never do what is expected, always the unexpected. She too handed out the maracas at Ohanas, ran the coconut the wrong way. YOu are not alone, feel free to email or pm me. Great big

 

[cat]

Hi April,

Your post nearly made me cry. I could have written your post 30 years ago about my sister. The exception being, you realize your DS will need extra help. My parents either could not or would not accept the fact that my sister has many disabilities.

Now 30 years later, my sister rarely leaves her room, rarely speaks and is paranoid. She's created her own world that only she can live in. My once beautiful sister is now 2 years old mentally.

Your world is not fake. You have a wonderful DS and you realize that he will need some extra help.

 

[Kat77]

I know this moment, I am so sorry! It tough when it takes you off gaurd like that. ((((big hugs))))

 

[MomOf2DisneyKids]

I am in tears after reading your post....because I know that could have just as easily been me! I can see my ds doing the exact same things, and me reacting in the exact same way. Many to you....I hope the rest of your trip goes well!

 

[brergnat]

I'm so sorry you feel so badly. I have been there a few times myself. My DS is about to turn 3 and he was diagnosed with "mild autism" last December. We always knew there was something different about him, but the diagnosis just made it more "real".

The other day, I was at the park with him and my younger son (14 months). My autistic son was making sand castles, all by himself, and I was playing with his brother up on a jungle gym. There was a group of kids and two of them were brothers (around ages 4 and 2) and they were all playing this really elaborate pretend game about being on a ship, seeing whales, being attacked by a giant squid, etc. I watched them for awhile in amazement at the story they were coming up with, and was especially surprised to see the little 2 year old getting right in the middle of it, talking up a storm (DS didn't even say his first words until close to 2 years old). As I stood there with my 14 month old, it hit me like a freight train that he would NEVER have an experience like that with HIS brother. "Make believe" and "playing pretend" are something that my autistic son has NO interest in and really doesn't understand at all. He is a very concrete, literal thinker. He cannot "picture" things in his mind that he has not seen, so he can't make things up. I just got SO sad for my youngest DS, because I realized that HIS life would be just as hard (maybe harder) than his brother's, because his brother is "different".

Just as I was feeling sorry for myself and my two sons, I looked over at DS and realized that three little kids had joined him, and he was actually acknowledging their presence (which he usually never does). One of the kids said "let's go on the teeter totter" and three kids got up and started walking over there. DS got up and went with them!!!! He hopped right on (it's a 4 person teeter totter) and they all started happily bouncing away, and DS was beaming! I had NEVER seen him do something like that. He actually was doing something that "normal" kids do.

I guess that's how life with him is going to be. There will be low moments, and then out of nowhere, he will surprise me and do something totally unexpected.

To get back to your experience, April, it sounds pretty typical to me, anyway. I noticed you said your son is in preschool and I have to say, the fact that he even wanted to hand out the maracas to the other children is great! He at least wanted to interact with them, which is better than social aloofness. As for the running, well, preschoolers will do that, even the ones who ARE typical! That's just something you have to deal with and at least you are aware of it. Unfortunately, many autistic kids have the bolting tendency. I think you are doing everything just right. I live in a very nice town but in an apartment complex, and I have a lot of neighbors, but none really with little kids. The ones who do have kids work and their kids are in daycare all day. I have lived here over 3 years and don't have any "friends" in this town. I don't have playdates for DS and he attends therapy 2x/week in a group setting and he will start preschool in September. It is very hard, even when the means are there, to get an autistic child set up on playdates with other kids their age. Too many moms out there either work all day or are not willing to let their kids be part of a playgroup with "special needs kids". It's unfortunate, but it's reality. I know it must be tough living in a place that is pretty remote, but the fact that your son is in a preschool program is a step in the right direction. Your reality is NOT a fake. It's YOUR reality. Everyone has a different life situation, and the honest to god truth is, I am not good at making friends myself, so I don't really expect my kids to be social butterflies either. My son would probably have friends if I made more of an effort to have friends of my own. I feel like I don't fit in here, though. I am only 28 and most moms around here are in their 40's and have a LOT of money (I live in Orange County, CA....). I wouldn't WANT to be friends with most of these women and NO WAY do I want to encourage friendships with spoiled rotten little monster children that they all seem to have.

And there's the rub. I may have an autistic son, but one of the WONDERFUL things that comes from that is that I do NOT have a child who feels entitled to everything, misbehaves ON PURPOSE out in public, has a case of the "I wants" every time I go to the store, or is rude to me or others. He is the sweetest little boy I have ever met (seriously), and the fact that he has a hard time being social just also means that he lacks the understanding of what it means to be a bad person. I hope he stays that way.

Keep your chin up! Although YOU perceived that Ohana situation as horrible, I wonder how awful your CHILD thought it was? Have you spoken to him about it? I bet he had fun doing the activities...

Remember that old adage: This hurts me more than it hurts you. This is bothering YOU much more than your son. Kids pick up on that, so try to be careful about how you react in these situations. Be encouraging and just try to make the best of it. Keep exposing him to these situations and don't give up!

 

[minkydog]

My heart goes out to you, April, because we've been in your shoes. There is something so cold, so demoralizing about seeing your child through someone else's eyes. My moment came when we were having DS evaluated for special needs preschool. They were putting him through his paces and he just wasn't doing anything right. As he lay there on the mat i realized that he asbeing "normal" for himself, that this is who he is. When I got home I lay on my bed and cried for 8hrs.

And then dried my tears. Yes, my son is different. There are lots of things he'll never do. So I choose to focus on the things he can do and take joy in his delight, no matter how "different" he seems. This is who he is. I still cry once in a while, especially when he hits a milestone like graduating from elementary school or turning 12. I'm sure I'll cry again in the future. I love my son and I want good things for him. We all do.

Take heart, April. You had a bad day. We all know what it's like. We've all been there in some way.

 

[Princess Stitch]

I am so sorry and I can't even imagine what this must have felt like for you. I know your DS may never be what you consider "normal" but I think as time goes on you will learn to focus on the things he can do as opposed to what he can't. I think it was wonderful that he was willing to try the activities at all! It's also great that your son is verbal and can communicate wtih you in that way as I know that can be a big challenge for some with autism as well.

Just hang in there and I'm sure with each passing year you'll see more and more progress wtih your son

 

[tacomaranch]

Hi Friends,

Thank you for the support. It is heart warming to know that this is also part of the process. We have had our DX for a little over a year and half and DS is 4. He has had been verbal for 9 months.

I honestly didn't know that there would be time when it hits. I thought I was doing everything right and was finished with the tears. We do our ABA, go to school, use behaviour modification and life goes on. I just didn't expect our experience at Ohanas. I am warmed to know that each of you have also made it thru the reality check and it does happen to most.

DH took me out alone most of the day yesterday and we talked about what happen for a long time. I was still very upset even after a nites rest. He put things in a bit better terms.

He said to remember how nice it is that our son was the only child who said, "I help" and then did. He let every other child who just had to cut in line to be up front cut. He is gentle and kind. He is a runner but he did come back!!!

We live in a very small town in very harsh enviorment. A person would never NOT stop to help someone out if they were on the side of the road. We help when a snowmachine is stuck. We help those in need and also those who don't even need help. If we didn't help, a person could die. We smile and say hi to the check out girl. Yes, it is stupid small town America, but I like it. I want my son to know that it is not all about being first, dog eat dog, take what you want. I like the way he cares and helps. It could be so much worse.

Thank you for letting me know that this is part of the process. I am so sorry for all that have also gone thru this before. It is just hard and sad but we will be home Tuesday and then we start to miss Disney again.

Blessings, April

 

[mma800]

Hugs April!
I have 2 with ASD, both are runners!!! They are mild enough to "blend" but not "normal" enough to have friends. The toughest part is the "typical" sib in between who just doesn't understand the disability ye.

One day at a time...some days are fantasyland, others are the DMV!

 

[SueOKW]

Hi April, those moments truly SUCK!!!! The problem is, as we all know too well, you can't prepare for them. I know the sucker punch feeling.

My sister-in-law and I were pregnant at the same time. Two male cousins to be born one month apart. My little dude had a serious accident at birth and nearly died... severe CP, epilepsy, MR. His cousin - just fine. Last year we were invited to watch his cousin perform in the final revue at his performing arts magnet school. Dancing, singing etc. Kevin, unhappy in his wheel chair with all the noise and the unfamiliar place...... ouch. I am really at the point where I hate to see them together in the same room. I avoid it, and that's sad.

It's that old Holland / Italy thing. Sometimes we forget that Holland is beautiful too.