So now we are post diagnosis.....

[tinkslite]

I hate psychologists,psychiatrists, therapists and counselors, oh, and social workers.
My husband and I were in foster care for several years (as parents not as kids), and we had our fare share of "professional" screw ups. Don't get me wrong, plenty of well meaning pros too; just a frightening number of burn outs that seem to have lost the concept of "best interest of the child."

My adopted daughter (yea, from foster care) has been ours for 11 years now. She is 14 and suffers from an array of issues/symptomology. I had taken her to counselors, play therapists and psychologists in the past but at best they did NOTHING (not even tell us what exactly was wrong....no actual diagnosis), at worst they caused more harm (putting her in a group therapy session with disturbed girls her own age where she picked up colorful language and inappropriate modes of dress).
SO, for years we avoided therapy........But we've hit puberty and it seemed like things have been intensifying lately. The tantrums, the irrational rages, the nightmares......
Yesterday I received something from a psychiatrist I've never had before: a diagnosis! He feels that Jessi has Azperger's Syndrome which is on the Autism spectrum. She also has PTSD from her early abuse (we didn't get her until almost 4). He figures some of her learning delays also stem from Fetal Alcohol Syndrome (something we already assumed).

The way this all looks on my daughter:
1. She is very literal and has her feeling hurt easily when she cannot understand something more abstract (like a joke).
2. She mimics behavior/language in order to fit into her peer group, not realizing that this can be offputting to her peers.
3. She is quick to anger and can rage for hours on end, often aiming her anger at someone other than the person/group that hurt her feelings (dad or mom).
4. She is a control freak. She doesn't like to be touched, she doesn't like her stuff in her room moved....
5. Her schedule needs to be rigidly followed for her to feel comfortable. She likes to do fun things, but they need to be planned and predictable. It a planned ride at dW is closed it could ruin the next 3 hours for her.....
6. She requires a LOT of sleep, not enuf sleep and the family pays


So, we are returning to Disney World in a matter of weeks. WE always experience meltdowns from her at the World (although she really enjoys and looks forward to it). Any suggestions on avoiding the overstimulation meltdowns? Any experienced Autism/Azpergers parents have any great tips???? I am WIDE open to suggestion.

 

[bookwormde]

Congratulations on finally getting a diagnosis, if you were dealing with psychiatrists it is not a wonder that she was not properly diagnoses, as they have not clue when it comes to Aspergers.

An Aspergers child in a non supportive family like her birth family is very susceptible to PTSD, as for the FAS it may be really hard to tell since many of the delays may be related to Aspergers and not having been diagnosed as a young child, you will only really know once you understand what it is to be Aspergers and appropriate accommodations, supports and skill training is in place. If she has progressed in a mainstream educational environment without a diagnosis it is likely that she is exceptionally intelligent.

The tantrums, rages and nightmares are actually quite “logical” once you understand her genetic make up and the characteristics with their gifts and limitations, which they encompass.

The manifestations you list a “classic” for an Aspergers child who has been undiagnosed.

Being literal has to do with exceptionally “logical” mind that typically comes with being Aspergers and is not “tempered” by typical societal social skills.

Particularly for females Aspergers children theatrical presentation is how they attempt to “mimic” social skills, which they do not “understand”. In its crudest form it is very disconcerting to people who do not understand the basis.

Your child is very frustrated because everyone expects her to be typical but she lacks the innate social skills to meet these expectations. You are “safe” and love her so she knows she can “vent” at you. You have to understand that the chronic high levels of anxiety she has been under by being a non diagnosed Aspergers child has been immense, and actually it sound like her maladaptive co morbid clinical issues are less than would be expected.

Controlling her environment and schedule is one way she can create a predictable situation where with her limited social skills she can manage without being overwelmed by the effort and anxiety.

The need for extra sleep is probably related to the extreme stress she is under and the Herculean effort she is having to put forward to exist in the typical world without highly developed intellectually based social skills.

Now first do not feel guilty about not getting her diagnosed earlier, you had her to clinicians but the reality is the vast majority are totally incompetent when it comers to Aspersers and that is not you fault, remember you kept at it an finally are able to move forward.

The great news is even at her age once you and her understand what it is to be Asperges and you have a knowledgeable and effective clinical and educational team for her amazing progress can still be made.
First thing on your list should be to get a copy of Tony Attwood’s “The Complete Guide to Aspergers” C/2007. It should be available in your local library but I would highly recommend buying a copy for yourself and your daughter, it is available on Amazon for about $25.

Once you read this the last 11 years will make a lot more sense

There are lots of threads on Asperges/Autism from many parents who vacation at WDW with their experience and ideas so while it will take you some time to dig back through them (be sure to set the time frame at the bottom of the page to at least 1 year) you will find lot of insight and information.

Also we have a very active group of Aspergers/Autism parents in the disabilities community board so pleas feel free to come over and ask any question about non WDW issues or just to vent (we all do it).

Welcome and let us know if we can offer any help

bookwormde

 

[LMC]

The way this all looks on my daughter:
1. She is very literal and has her feeling hurt easily when she cannot understand something more abstract (like a joke).
2. She mimics behavior/language in order to fit into her peer group, not realizing that this can be offputting to her peers.
3. She is quick to anger and can rage for hours on end, often aiming her anger at someone other than the person/group that hurt her feelings (dad or mom).
4. She is a control freak. She doesn't like to be touched, she doesn't like her stuff in her room moved....
5. Her schedule needs to be rigidly followed for her to feel comfortable. She likes to do fun things, but they need to be planned and predictable. It a planned ride at dW is closed it could ruin the next 3 hours for her.....
6. She requires a LOT of sleep, not enuf sleep and the family pays

Items 1 thru 5 sound familiar and my son is ASD (pdd/nos) not actually Aspergers (although the school system is trying to diagnose him with this). DS only sees things in black and white. There is never any in between. If you say it is going to rain cats and dogs he thinks cats and dogs will be falling from the sky (he is 14yo now). He still believes in Santa, tooth fairy, easter bunny, the works. He also does not get the sublties of jokes; as I said, there is only black and white.

2. He does not mimic conversation but he intently listens and laughs when others laugh and then laughs at inappropriate times as he can't disquish what is inappropriate. He rarely engages in conversation with others as he does not know how to carry on a conversation.

3. DS is not like this but it is described in alot of aspergers people.

4. Sounds like OCD but she could also have some sensory integration issues since she does not like to be touched OR it could go back to her PTSD.

5. DS has to know his schedule; he does not like the unexpected. I am very worried as school is about to start and I know he will not do too well so I have asked the special ed staff to look out for him as he does not ask for help. when we visit WDW, we have a flexible plan. The kids get to pick what they want to do for that day BUT I do not plan it out by the hour. we do make sure that everyone gets their top 2 or 3 attractions done (I have 3 kids so that is 9 attractions per day if we get to do them all which I think is very good!). If we complete their must do list, anything else is just extra.

DS14 also has some physical issues so by about the 5th day, he is in a WC. This works great for him, not for my back, and not for my 8 and 11 yr old who complain that they are tired of walking and want a stroller, blah, blah , blah....

Good luck with your daughter!!

 

[mamacate]

My son is quite a bit younger but we've had a lot of luck with getting the Birnbaum's WDW for Kids by Kids book and going through all the rides with him, and then having him pick out the rides he REALLY wants to do. It also tells you if there is water in a given ride, if it's loud, etc.

Now that he's a bit of a Disney pro (we're going for our fifth trip with him this November), he usually starts the day with a very clear vision of what he wants, and it's hard to balance that need with the rest of the family. We make picture schedules (ridemax is handy for making the itinerary in excel, then I add pictures from google image search) with a very sparse schedule, and identify a few things he really cares about to do in the day. We manage energy levels, try to have a TS lunch on days we won't be leaving the park by 2 pm or so, and we're very careful about trying to stay up for fireworks. We keep audio books with comfy noise-canceling earphones available for downtime (waiting in line, long TS meals, etc.).

Your daughter is older, of course, but maybe some of these approaches could work for her too. We fit much less in during a day than we would if we weren't going by his cues. That probably keeps us all happier and lets us have more of a vacation, actually.

I hope this helps!

Cate

 

[Libbyt]

We deal with a lot of these issues with my dd; although she does not have Asperger's, she has many similar characteristics. I really like mamacate's idea for having her very involved in the planning and helping develop a picture of what is going to be happening every day. You could also, in your plan, make some notes of possible alternative activities (stopping for a cold snack, checking out a nearby gift shop, etc.) that you could fall back on in case something happens and you get off track. You could also involve your younger children the same way - maybe have each child essentially "plan" a day's itinerary - that's also a great exercise for your dd, the give-and-take of following someone else's plans. Some of the kids I know who have this type of issues do very well if they have a specific, ongoing task to do........watch for the restrooms, watch for water fountains, look for hidden Mickeys, etc.

Good luck! I hope your family has a wonderful time at WDW! My daughter and I are going on our first-ever mother/daughter trip there in just a couple of weeks; I think this will be a good experience, but her anxiety gets the best of her occasionally - so keep your fingers crossed for us!

 

[tinkslite]

So, every parent learns to adapt to thier individual child's needs, and we are no exception. Pre diagnosis we already: Keep a posted "schedule" on Jessi's bedroom door so that she can refer to it for "what to expect" thoughout the day. Both brothers (13 yr old and 11 yr old) are ADD and ADHD respectively-so scheduling is helpful for everyone! We don't do spontanaity too well, at my house!
We have house expectations (rules), consequences and priveleges POSTED in our kitchen.
We limit Television both in timing (when and how much) and in content.
We limit extracurricular activities (1 music and 1 other per child no exceptions). For Jessi those are currently piano lessons (she loves them) and Pop Warner Cheerleading (she is mediocre at best due to gross motor awkwardness, but loves the girliness factor so its a toss up).
She has not had great success at public schooling, and spent the last year homeschooling with me. We will continue that with the help of a Virtual Connections Academy program this year......
Her input on Disneyworld so far is....She wants to do one meal with Princesses (I have ADR for Akershus), She wants to "try" Everest, "but I might change my mind Mom." Which is fine of course. She wants to go to Bibbidi Bobbidi Boutique and they are doing a Mother/Daughter set up for us. We've talked about taking turns choosing rides/shows. We've talked about taking a "cool out" on a bench or in an air conditioned restaurant once in awhile......So she's helping.
I am proud of this child. She has come so far, and been through so much. I just wonder, will she always NEED us to be a buffer between her and others?? Will she ever have mandatory skills like counting $? I can't help worrying.........

 

[Libbyt]

I was just chewing over the "is she always going to need me to do xxxxx" worry last night myself! Several years ago I realized that every single thing that Sally has ever REALLY needed to learn to do independently, she's eventually learned, and usually not in the same way other kids have learned it.......it's taken longer and been more traumatic (for me!!) but she's eventually achieved it. Hoping all the other skills that are still waiting to be conquered will also be one day!! Hang in there - sounds like you are doing everything right and you must have patience galore! Hugs to you!

 

[melisandes]

My best advice as a mom of an 11 year old Aspie girl is if they think they want to get on a ride but chicken out let it be.

also.
1. Get a Guest access card for her needs if she qualifies for one. My two both qualify for one for their specific needs. It makes my trip a lot easier. We also tend to take DD11 to the Christmas party or similar events instead where lines and crowds are smaller.
2. Get a hotel on property if you can afford it or one closely off of property that is easy to get to so you can make a quick get away in case of melt down.
3. Rental cars make the difference with autistic kids when they have a melt down. They are in a safe quiet environment that is just their family. You can go straight to the hotel as needed. No extra stops or waiting is always a plus in melt down time.
4. Bring something soothing. Even now my 11 year old likes to pet a stuffed animal when upset. We make allowances in the budget for one new plushie per day so that she has someone new to cuddle as needed in the park. Thats my daughter though and maybe not an issue for you. Keep it in mind though.

 

[ireland_nicole]

So, every parent learns to adapt to thier individual child's needs, and we are no exception. Pre diagnosis we already: Keep a posted "schedule" on Jessi's bedroom door so that she can refer to it for "what to expect" thoughout the day. Both brothers (13 yr old and 11 yr old) are ADD and ADHD respectively-so scheduling is helpful for everyone! We don't do spontanaity too well, at my house!
We have house expectations (rules), consequences and priveleges POSTED in our kitchen.
We limit Television both in timing (when and how much) and in content.
We limit extracurricular activities (1 music and 1 other per child no exceptions). For Jessi those are currently piano lessons (she loves them) and Pop Warner Cheerleading (she is mediocre at best due to gross motor awkwardness, but loves the girliness factor so its a toss up).
She has not had great success at public schooling, and spent the last year homeschooling with me. We will continue that with the help of a Virtual Connections Academy program this year......
Her input on Disneyworld so far is....She wants to do one meal with Princesses (I have ADR for Akershus), She wants to "try" Everest, "but I might change my mind Mom." Which is fine of course. She wants to go to Bibbidi Bobbidi Boutique and they are doing a Mother/Daughter set up for us. We've talked about taking turns choosing rides/shows. We've talked about taking a "cool out" on a bench or in an air conditioned restaurant once in awhile......So she's helping.
I am proud of this child. She has come so far, and been through so much. I just wonder, will she always NEED us to be a buffer between her and others?? Will she ever have mandatory skills like counting $? I can't help worrying.........

Hi. First of all, could you possibly switch back to regular sized black font? The red is really hurting my eyes, so I can't really answer this post well.

Second, we sit down w/ DD9 and she helps plan the itinerary. We have a very detailed touring plan for the day; I would recommend getting on a site like tourguidemike or touringplans.com to help with the touring plans. DD can spend ages doing this. But having a very clear plan really helps her cope and remain calm. It also helps avoid the lines and waiting that can become stressful.

Second, each of my kids carries a hip pack (you could use any kind of bag) that we call their sensory kit. It has a game console, mp3 player, ear protectors, sunglasses, hat with large brim, finger fidget and deck of cards. Whenever they start getting overstimulated, they can choose the tool they need out of their kit to help them calm.

 

[clanmcculloch]

Items 1 thru 5 sound familiar and my son is ASD (pdd/nos) not actually Aspergers (although the school system is trying to diagnose him with this). DS only sees things in black and white. There is never any in between. If you say it is going to rain cats and dogs he thinks cats and dogs will be falling from the sky (he is 14yo now). He still believes in Santa, tooth fairy, easter bunny, the works. He also does not get the sublties of jokes; as I said, there is only black and white.

The main difference beetween Asperger and the high functioning end of PDD-NOS is language delays (Asperger has none other than pragmatic language). The diagnosis itself (between the two that is) isn't important as long as his specific needs are being adressed and met.

Something that has made a HUGE difference for my daughter is learning about idioms (figures of speach). Her school did a huge entire lesson on idioms with the ASD kids in their speach therapy group. They were taught the general concept of figures of speach and even had a matching card game (you know, where you put cards face down and have to find matches) where they had to match cards with idioms to cards with the real meanings. This lesson really expanded on her general understanding of phrases possibly not meaning what they sound like they mean. She even ended up expanding on this lesson herself and tries very hard to come up with little double entendres and other idioms. It's now a game for her. It also gave us a word to use (idiom) to explain when somebody uses a figure of speech, which in turn helps us divert many a meltdown over her perception of being wronged.

5. DS has to know his schedule; he does not like the unexpected. I am very worried as school is about to start and I know he will not do too well so I have asked the special ed staff to look out for him as he does not ask for help.

For school, we have a schedule item written into my daughter's IEP. When she was younger, she had a laminated daily schedule taped to her desk and first thing in the morning if there was going to be ANY deviation from that schedule then she was to be told before they began the day. She was also warned of any fire drills or anything else that might vary her day including if a teacher from one of her specials or therapies was not there that day. As she's gotten older, I've had them change the requirement to making sure SHE marks down the schedule in her daily planner including any changes to her normal routine and that her aide verifies that this is done (I'm trying very hard to get her school to make her more accountable and responsible for this kind of thing as I firmly believe that she needs to learn to do these things for herself in order to become an independent, successful and happy adult).

when we visit WDW, we have a flexible plan. The kids get to pick what they want to do for that day BUT I do not plan it out by the hour. we do make sure that everyone gets their top 2 or 3 attractions done (I have 3 kids so that is 9 attractions per day if we get to do them all which I think is very good!). If we complete their must do list, anything else is just extra.

That's exactly how we do WDW. Now that my kids are getting older I'm planning to make sure that a couple of MY wants are added in to the list. As long as they know about my wants, they're really good about making sure they're done. I've been careful to NOT say much about my wants in the past because I've always known they'd give up some of their wants in favour of mine (I have such loving kids) but then we'd have meltdowns due to not getting all their stuff done.

4. She is a control freak. She doesn't like to be touched, she doesn't like her stuff in her room moved....

The dislike of being touched could be a sensory issue. My daughter hates to be touched when she's angry, though this is a balancing act because she's a sensory seeker so she also calms down much quicker if I can do some form of rubbing or brushing or other type of deep pressure technique.

The other control freak issues are typical obsessive compulsive tendencies. A good Occupational Therapist should be able to help her learn some coping strategies. In the mean time, I've learned that it is possible to make OC issues work for a child rather than against the child. A child with OC tendencies does VERY well with routine so it's very easy to get such a child into a regular schedule. We've used a checklist of things to do. I put it on a dry erase board to make it easy to add or remove things that aren't daily (get ready for Girl Scouts, put on running shoes vs just put on shoes as only certain days actually need running shoes, etc). She's been able to take over responsibility for the checklist as she's gotten older though I still do help her make sure she's got everything. This is also an important tool for later in life as she's learning how to be responsible for day to day activities and and responsibilities. This is a basic Franklin Covey concept for organizing one's life. Any time you see an OC issue interfering with her ability to function, come up with a rule to get around it (word it as a rule). Here's an example. One of my DSDs suffers from classic OCD (light switch flipping, lock checking, etc). She also had trouble with school tests because she would get to a question where she didn't know the answer and she would get stuck, totally unable to move on because she believed she had to do questions in order and perfectly before moving on. We came up with a rule where she was required to write down the FIRST answer that she could come up with and then move on. She wasn't allowed to go back to the question unless she finished every other question on the test. Once she finished, she was allowed to go back to whatever questions she felt a need to revisit and spend as much time as she wanted, right up until the teacher said the test time was over at which time she had to hand it in. This rule worked wonders for her. It gave her a way to focus her OCD problem. She went from nearly failing to straight As with this one simple rule.

5. Her schedule needs to be rigidly followed for her to feel comfortable. She likes to do fun things, but they need to be planned and predictable. It a planned ride at dW is closed it could ruin the next 3 hours for her.....

You've found the perfect place to check out which rides will be closed (the DIS). Being prepared and knowing in advance allows expectations to be set.

I'd also suggest something along the lines of Tourgide Mike. This gives you a really good idea of when there will be long lines at which locations and allows you to plan much easier. Include her in the planning.

The most important advice for your trip is for YOU to not get overwhelmed. Be flexible. Be prepared to leave the park if she's getting overwhelmed. You might want to check out the nurse's station at each park when you first arrive and ask your daughter if this would be a good place to escape to when she's getting overwhelmed. You may find that all she needs sometimes is a brief time in a quiet place away from all the stimulation. There's absolutely no harm in checking it out.

One last thing. HAVE FUN!!!!!