A cold slap of reality

[Ishy]

The slaps will continue.

But you will find yourself rejoicing too. Hang in there, do what you can for your child at this age, see a DAAN doctor if you can.

Last year DS 12 was one of the WORST years EVER.
This year DS 13 was one of our BEST years EVER.

People ask me to clarify what is the problem - especially those that are educators and don't know how to deal with it.... this year I started explaining it like this. Remember the Evelyn Wood Speed Reading from years ago? Read just the keywords.... well that is simalar to what gets through. The BLACK AND WHITE KEYWORDS are processed. So if there are too many variables and maybe and choices - they won't make it and my child will be overloaded.

Keep it simple, keep it clear, limit the variables.

Just a few years ago - churches, malls, resturants, school assemblies, sporting events, music, amusement parks - were nightmare sensory places for him.

This year, to show you how far he has come, he had a supporting lead role in the the school play - his memorization skills are great - had more lines then the lead roles even, even had a duet with his 'byebye birdie wife'! I have been beaming ear to ear for the last few weeks and I find myself crying tears of joy - to see him do something so AMAZING and LOVE IT and put on a knock yer socks off - performance. His drama coach was suprise to find out about his 'condition'.

I guess what I am saying is, you have to do the dips to get to the peaks. You have to keep opening up their worlds and encourage them to do as much as possible even tho it scares the bejesus out of you. I am guilty of the cardinal sin of minimizing, limiting and isolatiing my child for too many years and yes... I was in denial, BIG TIME - I did more harm then good.

I applaud your child for their participation Keep up the good work!

 

[Disneylvr]

Hi April, first I want to give you a big . Your post did make me cry because it is the exact same reality I have had to face with my DD, age 4. Family events are so painful for me while I watch my nieces and nephews play together while dd sits alone in the corner stimming with a toy car. Attempts to make her join the group often result in a meltdown and then stares from her cousins. But I keep trying! I know she will never be NT but I am 100% sure she will be able to function in the NT worldn in the best way she can. Have hope, new therapies are treatments are being discovered. Have you tried RDI with your son? We are going to start that with Madelyn next year.

 

[KirstenB]

Brergnat, I loved your story about the teetertotter!! I hope you find some non-snobby friends. This is one of those times I love the DIS!! No matter where we live, we can have DIS friends.

 

[Dis1978]

Rdi?

 

[nicoleakr]

I have a daughter who has npddnos and ocd and I know exactly how you feel. I also have another daughter who is mental ********. If it helps my daughters loved disney and I feel it was a very healing place for them.

 

[BlondeAlligator]

I too have had those moments when I see DD around NT kids & my heart just aches for what she is not, can not, will not be/do. BUT...I always try to look at what she is (really smart, beautiful, funny, gentle, kind, happy), at what she can do (communicate better, make me laugh, go to school on the bus, learn things quickly, finally use the potty, have fun) and what she will do/be (anything she wants!!).

As parents, the most we can and should want is for our children to be happy, healthy & loved. My daughter is all three in abundance. She may never be a social butterfly, she may never be a CEO, but if I can help her find the thing that she can do well that makes her happy, then I know she'll have a great life! Who knows, she may be the quiet scientist working in a lab who happens to find the cure for cancer or AIDS. But she might be a librarian in a small town, or a baker of delicious cakes...anything is fine with me as long as she is happy.

Hang in there...we all have each other to lean on, and that is a wonderful thing. When I am in a situation like the OP at Ohana's, I try to look at it through my DD's eyes...if she is having fun, then I enjoy watching her, and it is as if the rest of the world doesn't exist. The only comparison you should ever make in regards to your child is against his/her past levels achievement. Focus on how far he/she has come and not how he/she compares to NT kids...that's like apples to oranges. You wouldn't compare running times of able-bodies runenrs to those in a wheelchair...you can't compare NT kids to autistic kids.

I am rambling a bit here...time for me to give my DD her bath. Hugs & good vibes to all of us who are blessed with autistic kids...yes, I said blessed...whatever challanges they may have, they are our precious kids and the best kids on Earth!!

 

[freckles and boo]

Rdi?

I think it is - Relationship Development Intervention. It is a treatment for autism, like Floortime, that isn't necessarily behavior driven like ABA. I have a heck of a time describing it, but it is about engaging autistic people in a developmentally natural way based on developmental norms. Give it a google for more information.

 

[1stluvispooh]

April, I am walking in your shoes or at least very similar ones. We lived in a neighborhood that didn't have any children the same age as mine and most of friends with kids the same age fell by the wayside before DD was diagnosed. I have had several cold slaps but I must say now that she is 7 and we are 2 days from finishing kindergarten they are happy slaps. I expect her to be glued to me but now she is independent more and more. We have been blessed to have wonderful teachers and had the opportunity to move to a new neighborhood which has a bazillion kids. Kids which DD will play with and blend in with. My sister in fact said the other month while she was visiting that DD doesn't seem like she is ASD but more ADD. I guess what I'm saying is there will be small victories and relish them! You have a great advantage in the fact that you had your son diagnosed early!!!! Unfortunately my cries of "there's something wrong with my child fell on deaf ears for 2 years and then another 18 months on a waiting list.

Rejoice in every small accomplishment

 

[wiggles02]

April
Your story sounds a lot like a lot of my stories. My son would have done the same thing. He is six and when we go to concerts and such, I can let his younger brother sit with all the other kids, but not him. He'll wander off or start talking to the nearest stranger.
We just started him playing t-ball because we want him to have those experiences. I went to his game and all I could do was notice how different he was. He needs his own coach out there. He would get so frustrated when he didn't get the ball that he would throw down his glove and hat and yell "I'm Outta here!" The other kids were frustrated too, but didn't act out that way. I can't go to his games because it is more difficult for me than him.
I constantly compare him.
Anyway, just wanted to let you know that I can empathize.

 

[SandrainNC]

I'm so sorry April!!

I can't remember when I was actually "slapped" by reality. Probably at a birthday party or something when I realized that everybody else could socialize while their children played, but with my son, either myself or DH had to follow him around constantly. I didn't really get upset about it. Just kind of a reality shock because I had no idea the things children his age were doing! DS is 6 and we are going to O'Hana in November for the first time, so I can assure you that if he joins in the games, one of us will be right there with him too to help him try to follow instructions.

I have definitely been in situations though where all of a sudden I was hit by emotion about my little sweety. Just something triggered it. But then I give him a hug when I get home and feel a lot better!!! It is amazing how much better I feel when I see him, especially if something has happened when I am away from him at work or something.

I hope the rest of your trip went well!!

Sandra

 

[Dis1978]

I also feel so sad when I see the difference between my DS and his brother and cousins. We have only recently had the dx of Aspergers and I feel sad all the time. Every day I am reminded of how different he is. I sometimes think that I feel it so badly because we always thought that he was neurotypical and have only found out so late in his development that he is ASD. He is now 17 and it is very painful to receive such a diagnosis at this stage. At least with early diagnosis there is lots to try with early intervention having good results. We are trying ABA but I wonder if it is too late for it to be effective. I so much wish we had had an earlier dx. I feel a tremendous sense of loss of what might have been.

 

[disneyworldmama]

Wow, I am so sorry for what you went through. I know how hard it can be when the slap comes out of no where. My daughter is only 2 and has albinism and sensory integration dysfunction and i got the slap when I started to teach in her room at church. I noticed just how different she was from the other kids and how she doesn't interact with them and just plays by herself while they are all playing with each other. It is hard adn I am sorry you had to go through this at WDW. HUGS to You

 

[bopper]

Wow, I am so sorry for what you went through. I know how hard it can be when the slap comes out of no where. My daughter is only 2 and has albinism and sensory integration dysfunction and i got the slap when I started to teach in her room at church. I noticed just how different she was from the other kids and how she doesn't interact with them and just plays by herself while they are all playing with each other. It is hard adn I am sorry you had to go through this at WDW. HUGS to You

I don't know your daughter but it is typical for 2year olds to engage in parallel play...not interacting with others but playing near them.

 

[wendylovesdisney]

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.

I second this. My 4 year old girl has PDD-NOS and I often feel like my husband and I go through times where we convince ourselves that she is normal. That we were wrong. That everything is fine. And then something happens and my world explodes. I have gone through this several times and even knowing that we do it, we do it again. I think it is because we WANT her to be okay, she does improve... but still.....

One of my hardest times was the first time a doctor told me she could be "high-functioning". I was devastated. Not feeling better about things (as I assume the doctor thought I would be)

We are going to Disney in September. It will be the first time I will ask for a GAC for her. I still have reservations and feel "guilty". (Because my child is "normal" - right?!) I know she might need it, and it has the possibility of making our trip one to remember, rather then me in the hotel room crying.

Keep your chin up. You have support. Been there done that.

-Wendy

 

[tacomaranch]

We are home again and it feels so safe! We were bored on Sat so I remembered there was a horse show up at the fairgrounds. I packed up DS and off we went, hoping for a good day but expecting bad.

Friends, he was great! He was talking to a little guy about 7 when we arrived and the boy was just mean. He kept saying things to Hunter that were just not nice, like saying how he talks wrong and just his attitude was not good. Unfortunately, Hunter didn't catch on so the boy kept leaving and coming back to say more mean things. Hunter went to him and called him back and in a bit too loud said that the boy doesn't like him and to come back to me. The family moved bleachers.

Hunter did go on to play with another boy who had toy cars and then got into interactive play for about an hour with another little guy. The families were so nice and gave Hunter treats and just treated him so nice. I complimented the families on how kind their children were and how generous.

It was just good to be back into my fake world where for the most we are just kind to each other.

Blessings, April

 

[Zoemakes5]

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

Oh, April. I'm sending big huge hugs! I think it affected you so much because you weren't anticipating it. While rationally, we understand that our kids are "different", could probably even give a dissertation on those differences, it's another thing entirely to "see" it and "feel" it. And, unfortunately, you'll probably have a number more of those moments as time goes on. I tell you that not to make you worry, or upset you, but to prepare you for those moments. I think if you're prepared, you'll be able to bounce back alot faster and not have it hit so hard.
I think pp's have had amazing advice. First, reality check as to whether/how it impacted your DS, or if it did at all. Second, put it in perspective as to how bad/different was it? He could have gone running through the restaurant screaming and knocking things over because the noise was too much stimulation. In the bigger scheme of things, probably not so bad. Third, focus focus focus on the positive. Make a big deal about little milestones. When your son comes back to the table, gush about how proud you are of him for offering to share, for coming back. When he's smiling, tell him how much you love to see him smile. Reinforce in very positive ways those things that you like. Repetition is the key. I bet you, if you went to WDW on a semi-regular basis, and went to Ohana's each time, pretty soon, he'd be a pro.
I'd also recommend getting him out and about more. Get him involved, as much as possible, with other NT kids. Sounds like the perfect community to do so. With any child, nt or challenged in some way, you "teach" social behavior through a series of interactions. Our kids need more "teaching" and therefore, I think, more, rather than less interactions.
Big huge hugs. I hope the rest of your trip is the best!

 

[a1tinkfans]

Hi April!


I wanted to say that your precious HUNTER is just that, PRECIOUS. None of us are perfect and each of us is unique. As a mom with a child with AS, my heart goes out to you. I know how you feel. I know what it feels like to feel so isolated sometimes. Too feel the differentness, for lack of a better word.
The best we can do is try to get as much intervention as possible for our kids (social skills classes, sensory integration classes) in the hopes that when it is time (and time does fly) our kids will be able to "fend for themselves."
It is so very difficult to "see" and "feel" the differences. So, we need to embrace differences as best as we can and be strong for our kids. We are their advocates.
Good Bless April!

 

[bzzymom]

My heart goes out to you. My son (10 next week) has not been diagnosed yet, it may be asbergers. there is just something about him, that is different, eventhough he does very well academically. I have come to notice it though his playing baseball this year for the first time. I have seen how his behavior is around kids his age, and I can't believe that I have been ignoring the signs for the last several years. I have to figure out where I can go to for insurance to pay for the eval.

 

[nonsmom]

Hi, my DS5 is in Sp. Ed preschool. I know how you feel. No diagnosis, but just know something is not right.

Anyway, I wanted to share with you the name of a book my sis bought me for mother's day. It is called, "The Elephant in the Playroom" written by Denise Brodey. It is a book compiled of stories written by ordinary parents about their experiences raising special needs children. I couldn't put it down after I opened it. I have been telling all of the other parents in my DS's class about it. Even the school psych said it was on her summer reading list.

I hope it helps!

 

[Microcell]

I am not the parent of a child with Autism, but worked for years with children and adults with autism. I guess it gave me a different perspective because I could go home and leave it for a while.

You really have to look for the improvements, and they are small, but so much more meaningful.

There was a man we worked with who had major OCD and they were building a house next door to the group home, so he went over alot and the workmen let him have some nails to count, so he would grab a handful and we would be sure he asked each time, by signing "please" and he would take them and count them on the table. He would get up alot to go to the restroom (as a result of drinking liquids often- another OCD thing). He was fairly calm, and a coworker decided to take one of the nails to see if he was really counting them or if he was just moving them around.

We were surprised to see he was counting them, as he sat back down and began to look around for the nail. The coworker held up the nail and said "Hey John, you looking for this?" and to our surprise, the normally manic man burst out laughing! He got an attack of the giggles that was infectious. We learned he, though almost always very serious, could take part in a joke! We figured out when he was in a joking mood and improved his quality of life by giving him opportunities to laugh as often as possible.

Sometimes you have to look for the good, but it is there. I will never forget his smile or laugh.