Special Needs Child Vent

[bumbershoot]

For his bottom, be sure to get some nice probiotics to help get back the good bacteria in his tummy after the antibiotics. Acidophilus if he can stand the taste, acidophilus milk if he drinks cow's milk...something like that.

 

[kehlyrsmom]

I have two kids on the spectrum (my oldest is Aspbergers & youngest is moderate autism and apraxia of speach) and we have done WDW successfully for the last four years. Just returned from our most recent trip in Sept.

Definately read the disabilities thread a lot of great information.

I always get a note from my Dr. explaining the disability etc one to use for the GAC card but also to have one me as well just in case one of them has a really bad meltdown on the plane or at the parks. I just feel that having a wrtitten Dr. diagnosis on me may be beneficial if needed.

Each year we do a lot of role playing in regards to going to the airport and such. We also took them to the airport once so they could see the planes take off and such.

My son wears headphones on the plan and pretty much the entire time in the parks. He also has sensory issues. We take breaks during the day and go swimming and maybe only stay for the fire works one time during our stay. We usually go for 8 days 7 nights.

I have found that my daughter does not like the 3D movies so we avoid those, but she loves the roller coasters. My son has preferred the slower moving rides the last two years but the first two he did some roller coasters.

One thing on the rewards we are trying to wean our son from them as because from several years of thearpies and camps where he got a prize from them at the EOD he now expects them which has resulted in a lot of meltdowns.

My son has been having a lot of issues with school becomes very frustarated and has a lot of anixety now that more is expected of him (he is in 2nd grade) I have had to pick him up a couple of times already and have had a number of phone calls due to his behavior at school. My daughter is doing really well now but we had a lot of issues with her was well a couple of years ago. Both are on medication he just started this summer, she has been on it a couple of years now. We did not want to medicate and would prefer not to but it became a necessity due to the servity of the issues they were experiencing. Anyway we are working with our Dr. as I speak to change my sons meds because I do not think the one he is on is working for him.

Hang in there. Hugs to you as I can relate.

A couple of other things definatley rent or bring a stroller I still rented on this year and they are 9 & 8. Also if you have a family member/members that can go on vacation with you that is also another plus. My parents have gone with us as well on all of our vacations and just having the extra set of hands and eyes is so helpful. Plus like this year my parents took both kids back to the hotel one afternoon and gave my husband and I a few hours in the park on our own. Another day they took our daughter back for a little while to rest and we went to another park with our son.

 

[KirstenB]

I am right there with you. Right now our 4 yr old dd with autism is having a fit about the "one bite" rule of dinner. She has an 11 yr old sister, and I spend a lot of time grieving/comparing the two.

I'm about to tell you something that may not help, but it's exactly how I feel. We are DVC members, and this year, Universal tix were so much cheaper, we skipped WDW and did Universal and Sea World. 2 days were good, 2 were dreadful. My biggest regret is we weren't "staying where we were playing". When Zoe had a meltdown, all 4 of us had to return to our resort. Very unfair to our older dd.

I'm giving WDW one more try again this coming year. We'll buy WDW tix, and try to really keep the days to a slower pace. If this trip is even remotely as bad as last summer's I told dh I would sell our DVC points. We've been members since 1993, so I don't say this lightly.

Here's the light at the end of the tunnel. We took the girls to a condo at the beach at the end of summer. I've always loathed beach trips, cause I get bored. Not this time. Zoe was so happy, digging in the sand, swimming in the pool, splashing in the waves. Our older dd was thrilled to be at the beach. My point is, I've changed the way I do so many things, to accomodate Zoe. Frankly, this is just one more thing.

I hope you'll have a good WDW vacation. Just be on the lookout for other options too. This beach trip was one of my favorite vacations ever. No meltdowns, no big sensory issues, etc.

Finally, we're working VERY slowly on potty training too. She has gross motor and motor planning issues, and I'm not sure her body can sense when she needs to go. You can vent to me anytime. I will be here for you.

 

[ireland_nicole]

OP,please read my whole post: I don't mean this in a "judgemental" way, but in an "I've been there" way. I'm glad that you're being honest about your feelings, but the mental place you're in isn't healthy. I really think you'd benefit from sorting things out with a professional. I think sometimes it's hard to remember that our kids didn't choose this, and they're not acting the way they do out of any malicious intent. They're honestly not trying to tick us off or make our lives miserable. It's not personal or directed at us, even though it certainly feels like it when you're restraining 50 lbs of biting, kicking, screaming 8 year old. They didn't ask to be here, and they certainly didn't ask to be born "different."

There is a grieving process involved with finding out any child has a disability. You grieve the "perfect" child they're not, all the things you don't think they'll ever do, all the family experiences you don't think you'll ever have. But the thing is, once you can let all that go, you'll be surprised by all the amazing things our kids CAN do. And the amazing tenacity they show, even when everything is so much harder.

Now that my kids are getting older, I can honestly say I hate autism. And to be completely honest, I wish my daughter didn't have it. Or any of her other disabilities. But without them, she wouldn't be "her". I'm slowly learning to look at her autism as more of a unique perspective, and trying to see the strengths she has because of it. To see humor, and giftedness, where once I could only see the defecit.

It is different than you expected. And it always will be; but someday you'll realize that that's ok. It will be part of the tapestry of your life, and add colors and shades that you couldn't have imagined.

In case you haven't read this, I'm copying in the poem "welcome to Holland" I think it encapsulates so much of what I'm trying- and probably failing- to say.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

[smylie1]

I just have to chime in and say that I am so happy to read everyone supporting this Mom. I read the OP and immediately thought...oh no, here we go. Some hollier than thou, perfect DisMommy is going to bash this poor woman for being honest. We've ALL read those posts. I am so pleasantly surprised to read people being helpful and not judgemental. My faith has been restored!

To the OP....I don't have any practical advice. I have been blessed with easy going children who travel well and roll with the punches. I can only imagine how frustrated you are. I hope that your vent helped...and maybe you got something helpful out of the other posters.

I was thinking the same thing. I work in a public elementary school where we have 6 students at different levels of the Austism spectrum. I work with 2 of them for a short period of time everyday. There are days when I feel exhausted after our time together. I have often said prayers for the parents. I cannot imagine how if must feel to be in a constant state of awareness of "melt-down" triggers. God bless you and your family.

 

[SMWfamily]

It sounds like you are talking about my son. He is by all definition, just like your son, he has PDD NOS and sensory issues. The transitional tantrums, lake of language, everything. We plan to travel with him and my NT 6 year old daughter to disney for seven days this March. I am fully ready for tantrums on the plane, meltdowns over leaving attractions, and dangerous repetitive behaviors like head banging and darting infront of people and moving vehicles.... This is just the way our life is now. I find constant stimulus and "engagement" really helps my son. If left to play alone for even a minute, he goes into his little world, and its very hard to get him out. Engaging a 4 year old is exhausting, but Im pretty sure ( at least with my son, every PDD kid is different) that Disney is so stimulating, that it may keep the tantruming and odd behaviors to a minimum. As for Transitions, There is someone on this board who created a transition book for their Special needs child. I think I saw it on the DISability board here. It was phenomenal. All you need, ( again my opinion) when you have a kid like our sons are proper tools to navigate life with. Toys for waiting in lines, snacks for bus rides, video's for night time transitional issues, etc. I think the best place for a kid with Sensory issues is Disney. Seriously. I hope I managed to cheer you up. Know I am going through exactly what you are, only my son is alittle younger. Hugs.

 

[Minniemama350]

My oldest was diagnosed as full blown ASD when he was 3. Before then, I had to do everything the same way or it was a total meltdown. My youngest has a sensory disorder problem that has been hard to deal with as well, though he is typical in every other way. Now that they are 12 and 9, things are pretty good. We have issues like everyone elde, but things haven't gone the way I thought they would. They've been much better. I know it doesn't go this way for everyone. I don't hate Autism. In fact, it rather intrigues me how an ASD kid's mind works. I could NOT have said anything close to this statement 9 years ago. I tell you this now only so you will possibly see that things don't always have to be this hard. I know it is right now, but there is hope when you are ready for it.

Some things I have done, some of which may or may not be accessible to you. We purchased a camper so that they would be sleeping in their home away from home. It sounds like this may not work due to distance, but maybe it would for another occasion. Wherever we camp, we are in familiar surroundings. Awesome!

We had intensive sensory integration a few summers ago. I wanted my kids to really enjoy the attractions and not just tolerate them(they are older, and the toleration came with time.). It was alot of time with OT and a big commitment at home to continue the "sensory diet." It worked very well for us. My oldest now rides Space Mountain and begs to go back.

Please remember that many ASD parents need someone to talk to and there is no shame in that. Whether it is a professional or just a support group, it would be good for you to be with people who truly get it. I used to feel so isolated, but now I know lots of folks with the same issues. It really makes a difference.

As for the split vacation, why not? Many parents hang off of a ride for one kid so the other can ride with the other parent. Maybe you could have times that you are together and times that dh takes your older child. Don't forget about parent swap! This could help you get time with your other child too.

Potty training: I worked as a spec. needs Pre-K para for 4 years. Never met a kid I couldn't train unless it was a physical condition like paralysis. I put them on the potty every 30 minutes like clockwork. Sat for 2 minutes, no longer(at first). Talked about going pee pee and how everyone goes. Read "Everyone Poops". Sang a made up potty song. We flushed, washed hands and got a drink of water. 30 minutes later, we did it again, all day long. Eventually, they all go. Don't whoop or holler when he does, but give him one tiny piece of candy that he can ONLY have when he puts the pee pee in the water.Tell him quietly how great it was! After that,keep the routine up. He will have accidents. Don't make a big deal, just calmly say peepee goes in the water. You can also try puttng underwear under the pull-up at this point so that he will feel the mistake, but not make a huge mess. Pull-ups are so absorbent the kids just don't seem to care sometimes.

I hope this helps you a little.

 

[Luv Bunnies]

It is different than you expected. And it always will be; but someday you'll realize that that's ok. It will be part of the tapestry of your life, and add colors and shades that you couldn't have imagined.

In case you haven't read this, I'm copying in the poem "welcome to Holland" I think it encapsulates so much of what I'm trying- and probably failing- to say.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I was thinking about how I wanted to respond to the OP and then I read Ireland Nicole's post (quoted partially above). This says it all! I know it's difficult, but please try to look at your child for who he is. You can learn so much from both of your kids and all of their individual attributes make them who they are. As they get older, you'll find out that Holland is a wonderful place, just like Italy. They're just different.

 

[QVCshopper]

OP, I'm so sorry to hear about your situation. My DD is delayed as well, and I know it can be difficult to not compare your children. Do you have any friends with delayed children? Or can you meet some other parents where your son is getting help? Talking to others going through this is very helpful and reassuring.

Also, as far as other people judging, I try to not look at them. I deal with the situation as best as I can, focussing on my child and looking at the floor as I leave. The stares just got too painful. I know they are there, but I don't have to respond to them. That goes for both of my kids tantrums.

We just got back from our trip. My DD has definite light/sound sensory issues that seemed worse on this trip. I had to drag her on to Living with the Land because she was scared of the rainforest at the beginning--I don't always let her win the battles. A CM handed her a flashlight, so I think I'll bring one of those (or a glow stick) next time; after that, she did well and actually enjoyed the ride. But, we avoid a lot of rides beause, while 48" tall, she just wouldn't be able to handle Haunted Mansion or anything scary.

I also think I'll get her some cute pink earmuffs like someone else said. The last time I took her to see Curious George in the movie theater, she hid under one of my reusable bags until I was able to get my DS ready to go... she was shaking and holding her hands over her head. Loud sounds really get to her, as do very crowded places. I'm not sure why these things bother her, but it's a real fear to her.

Anyway, good luck to everyone who posted. I still believe kids develop at their own rate, but getting help speeds up the process.

 

[billwendy]

Hi - awww - you totally need a support group!!!

I am an OT who works with a lot of children who have diagnosis' on the "spectrum". I was wondering if your little one has a sensory diet in place? This is a totally necessary tool that helps in general, but in a place like WDW, it would have to be a must to help the day go better. I cant find it online, but there is a chart that helps us understand why a person with sensory processing disorder can get into "shutdown" mode. Im not sure I can verbally explain without the visual, but I'll try!

Every day we have "events" that affect our sensory system that we need to recover from. So lets say we are on a trip to WDW. You dont get a good nights sleep because you are not in your own bed, the sheets are scratchy and smell different. So, already first thing in the morning, you havent "recovered" from the plane ride the day before. Your arousal level is already above "homeostasis" putting you on edge. Then, someone bumps into you in line - you rise up another notch, the music on the ride is loud - yet up another notch, then it rains and your feet get wet and your shoes/socks bother you - this may be what puts you into "shutdown" mode - this is the "fits", uncontrollable screaming etc, that you as a parent just cant seem to "get into" to try to calm them down. Typically, we are able to recover from things fairly quickly, although we all have a day here and there that we just cant wait to go home and go to sleep to just end that day - lol!! People with sensory processing disorders just cant recover as easily.

As far as the fear, it is real to these children. We have a built in "flight, fright, fight" system that goes off when it feels threatened. I learned at a course to picture it like you walking down a dark alley in a bad neighborhood at midnight and someone touches you on the shoulder what would you do? How would you react? This is how the people with SPD's feel! Imagine how taxing that is to your system!!! That is why the sensory diet is so helpful! Typically lots of "heavy work" is what is needed to bring the system down to homeostasis. If you had a sensory diet in place, hopefully you could do a few things along the way to keep from hitting shut down.

While your little one is still only 4, 4 year olds are pretty smart and you have to help them understand that they do not run the family. Its sooooo hard because you just want them to behave or be calm etc - but you could be setting yourself up for lots and lots of this controlling behavior. Many children with SPD's love to be in control because then they will be able to predict better and know whats going to happen. At this age they can learn to help themselves by choosing activities to help them calm (check out the Alert Program for Self Regulation- How Does Your Engine Run? you can google it).

Social stories, picture schedules, trips to the airport, exposure to shorter new things are all things that can help as well. You may also want to do things like bring your own sheets (he really has to sleep well to recharge), bring along some type of scent that smells like home to put in the hotel room, try eating breakfast in your room (familiar things prepared familiar ways), following a schedule that has a lot of breaks in it ( maybe you and your little one could go back to the hotel after 3 hours in the park while Dad and the older one explore rollercoasters or something), and then go back into the park again later in the day. Since he likes riding the bus, this may be a way to help "bring him down" - it can be a soothing motion (many kids fall asleep in the car).

Please, if you have any questions just ask. I bet your therapists would be very helpful too in helping you plan your trip!! Hugs!!

 

[JamesMom]

OP here, thanks everyone - y'all are so nice!!

I love my son and understand AND appreciate he handles the world in a different way. My older son aggravates me, too, at times. It was just the fear that was expressing itself yesterday.

As he has gotten older, and I have learned more, things are easier. When he was younger I couldn't drive a different route home or there would be a fit. He had to have lots of rough play to satisfy his touch needs. The loud noises at bounce houses keept him far away. All of these behaviors have improved over the years to where he can play with his brother in the bounce house and not need quite as many hard hugs and he can handle novel places. But he still needs his baby blanket in stressful situations and I know I will be the only one in WDW whose kid is in a hard stroller in 80 degrees with a baby blanket on their kid! LOL. (It was the same way in Sea World a couple of years ago - except it was 90 degrees then. He even took the darn thing into the pool with him! Talk about a security blanket.) He used to never acknowledge other people except for family even in crowded places - now he will occassionaly seek out other children to play with (still prefers brother above all others). He used to love textures and play in dirt, sand, paint etc for the stimulation - now he's almost a clean freak by not wanting things on his hands. He has changed and adapted over the years and anticipate continued improvement.

If we go, I definitely plan to acclimate him beforehand with pics/videos of Disney (we have PLENTY) and he is well acquainted with Mickey - loves the TV show andchoose to dress as him for Halloween. He understands how big Mickey really is by seeing the pics/video of him at our wedding

He could suprise us and do very well... or he could not react well at all and cause scenes all over the place. But such is life, right? Who knew my Halloween loving 6 yr last years was terrified and hid in my shoulder all during the tame Haunted Mansion?

I probably need a support group. We are a bunch of homebodies and don't really socialize outside of family. I find my social outlets here on the internet and occassional girlfriends - none of whom have special needs kids. And since he takes the bus I don't get to chat with the teacher and other moms during pick up/drop off times. I guess I miss that daily interaction.

Plus I handle my mom's care at the alzeheimers home. I find I deal with her in the exact same ways as my son - maybe God was preparing me for handling her by sending me my son. She is in late stage six and fast approaching stage seven - the last.

Thanks everyone for listening and appreciating that my comments were venting - not a diatribe against life with my son. He brings such joy in many areas of life, but without a doubt, brings frustrations as well.

 

[ireland_nicole]

OP here, thanks everyone - y'all are so nice!!

I love my son and understand AND appreciate he handles the world in a different way. My older son aggravates me, too, at times. It was just the fear that was expressing itself yesterday.

As he has gotten older, and I have learned more, things are easier. When he was younger I couldn't drive a different route home or there would be a fit. He had to have lots of rough play to satisfy his touch needs. The loud noises at bounce houses keept him far away. All of these behaviors have improved over the years to where he can play with his brother in the bounce house and not need quite as many hard hugs and he can handle novel places. But he still needs his baby blanket in stressful situations and I know I will be the only one in WDW whose kid is in a hard stroller in 80 degrees with a baby blanket on their kid! LOL. (It was the same way in Sea World a couple of years ago - except it was 90 degrees then. He even took the darn thing into the pool with him! Talk about a security blanket.) He used to never acknowledge other people except for family even in crowded places - now he will occassionaly seek out other children to play with (still prefers brother above all others). He used to love textures and play in dirt, sand, paint etc for the stimulation - now he's almost a clean freak by not wanting things on his hands. He has changed and adapted over the years and anticipate continued improvement.

If we go, I definitely plan to acclimate him beforehand with pics/videos of Disney (we have PLENTY) and he is well acquainted with Mickey - loves the TV show andchoose to dress as him for Halloween. He understands how big Mickey really is by seeing the pics/video of him at our wedding

He could suprise us and do very well... or he could not react well at all and cause scenes all over the place. But such is life, right? Who knew my Halloween loving 6 yr last years was terrified and hid in my shoulder all during the tame Haunted Mansion?

I probably need a support group. We are a bunch of homebodies and don't really socialize outside of family. I find my social outlets here on the internet and occassional girlfriends - none of whom have special needs kids. And since he takes the bus I don't get to chat with the teacher and other moms during pick up/drop off times. I guess I miss that daily interaction.

Plus I handle my mom's care at the alzeheimers home. I find I deal with her in the exact same ways as my son - maybe God was preparing me for handling her by sending me my son. She is in late stage six and fast approaching stage seven - the last.

Thanks everyone for listening and appreciating that my comments were venting - not a diatribe against life with my son. He brings such joy in many areas of life, but without a doubt, brings frustrations as well.

As an idea, a much more comfortable stroller is available from orlandostrollerrentals.com They have a stroller that will accomodate up to 75 lbs (which is the same one we have at home) and a special needs stroller that will accomodate up to 100 lbs. My son is sensory seeking and loves that he is "nested" by the way the stroller comes around him; DD, who is otherwise sensory avoiding, loves that it feels "safe". They love the super amazingly awesome sun canopy that comes all the way over their bodies. Also, it's super easy to maneuver and you'll have it if you need it while waiting for a bus or around the resort, DTD, etc.

There are a lot of us "experts" at experiencing WDW w/ Autism. Like the PP's said, it requires a huge amount of planning, but can be so, so, so worth it. We're here when you have any questions.

I hope your son is getting good OT, that and in my case also play therapy w/ a specialist in syndrome mix kids like mine has made a world of difference. It's no where near perfect, but we have a plan.

You definitely need good support, and honestly, a good counselor isn't a bad idea. It's not that there's anything wrong with you at all, it's just that you're undergoing huge stressors, and in order to care for your mom and your son, you have to care for yourself first. I was a firefighter before I went to nursing school and then became a mom of 2 exceptional kids. One of the first things I learned was to never give a victim my air. Because then somebody else is going to have two victims to find. And in your position, there is no backup coming, so you really have to learn how to keep your tank full. Your family needs you, and they need you to be 100%.

One of my favorite qoutes is, it will be ok, even when it isn't. I have no idea who first said it, but it helps me through the rough times. A lot of days, it's easy to start feeling hopeless, and discouraged. But as you know there are better days. You do make progress, you just can't always see it in the short term.

Finding a local support group can be a lifesaver. You need people in your life who share and understand your experience. It's validating, and a chance to be "real." I have 5 good friends who have "typical" children, and thankfully have surrounded myslef with incredible, compassionate, wonderful women; but as amazing as they are, there are parts of their experience I don't understand, and parts of mine that they can't comprehend. It takes someone who's in, or has been, in the trenches to really "get it." I would really recommend checking out your states parent to parent website. They have other parents who have already been where you are, who can support and mentor you while you get your feet back under you. P2P is also a great resource network.

Sorry to be so long, hopefully you'll forgive my need to talk so much.

 

[Kimkimba]

I know exactly how you feel. I have 2 with special needs, and somedays I really feel like I'm just going to break down. It's always hard, but I believe that God gave me this children because he knew I would do everything I can for them. The patience, compassion, and empathy I have learned from my children takes me a long way everyday. I know I am a much better person because of my children.

My dd is 6 and has high-functioning autism. She has come a long way in the last 18 months. She wasn't potty-trained until she was 5 (you know the saying "no one goes to kindergarten in diapers" - well, they never met my daughter). And she still has her blue blankie that is like a rag now but is very comforting to her.

She went to Disney when she was 2 and it was not pleasant. And I don't think I'll be ready to try an airplane for a few years; I can't imagine a meltdown on an airplane.

My ds also has a lot of issues I don't usually get into on boards, but everyday is a test for me.

Hugs for you.

 

[Family Loves Disney]

Thought you could use one. I'm not sure if you got the answers you are looking for, but I just want to tell you as one special needs mom to another, YOU ARE NOT ALONE! I don't feel like you do now, but I am sure I probably did when ds was John's age. Every child on the spectrum is totally different, not one child has the same symptoms or issues although there are similarities. My son was diagnosed with SID at age 3 and autism at age 4. We work hard with him on a daily basis for him to be high functioning when he was moderately functioning at the time of the diagnosis. My suggestion for you is to find a support group for families with special needs children or medically fragile children. We belong to FOCUS (Families of Children Under Stress) this support group is for families with children of all disabilities. I tried to find a support group for autism, sadly there was not one in my area. A patient's mom turned me toward FOCUS. It has been a God send! We have found friends that are dealing with the same issues we are dealing with.

As for the meltdowns, ignore those that look. And if someone says something, tell them that you would gladly switch places with them and see how they deal with a child with autism having a meltdown that can last for hours. I have said a few unkind words to those that dare judge me and my child and those that think they know it all. I just call them ignorant fools that need to go get educated. I even had a mom and grandmother tell me that my son did not deserve to be out at public functions. If my children were not with me, I think I would have gone to jail for assault myself. People are uneducated, cruel, and ignorant at times. Just know you are not alone.

 

[Family Loves Disney]

I know I am going to get flamed for this, but I have worked with sensory integration kids before, and i have found that sometimes catering to their exact wishes at all times only makes their issues worse. I would put my foot down on the toilet training thing. He likely CAN use the resroom, but chooses not to. Us a reward system an make the payoff at the end really big. Long term for you and your family the consequences are gonig to be sever if he continuse to dictate everything the household does. Start with little things like the example of leaving the pool where you made him leave anyway. Tell him you are not going home and deal with the meltdown. Teach him how to cope with what makes him uncomfortable. Find some soothing technique that works for him and give him access to it when he is upset. For one particular child I worked with it was a DS. When he was having a totally horrible day I would let him have 10 min. DS time to calm down. Focusing on something he enjoyed helped him get over it. Once you get him to work through it once next time it will not be so bad. The next time he may just get over it and move on. Conquering these issues at home by not backing down and making him work through his fustrations and find coping mechanisms will allow you to do the things you want to do without feeling bound by his wishes at all times.

You are right you are about to flamed for this, just a little. Children with SID and autism are potty trained when they are ready. Their bodies are different from neurotypical children. They do not feel the need to go like normal children do. My son is 9 yo and was not completely potty trained till he was 7yo. He still has accidents at night. Don't make them feel bad for their accidents, that makes it worse. This is my opinion as a former pediatric nurse and a mom of an autistic child.

As for the meltdowns, I agree with you just a little. We don't treat our son differently than we treat our daughter. We know that he has limitations, but we will not let him use his limitations to his advantage. He told me one day that he could not do something because he had autism. I immediately corrected him and told him that was no excuse! Yes, he has autism but autism does not have him! He was punished and we explained to him why, he understood it and took the punishment. Trust me it does get better the older he gets, I was ready to pull my hair out when he was younger.

 

[BabyEars]

You can also get a GAC that would allow you to wait in a separate area from the main queing line so it is quieter and less crowded.

My son is on the Autisum Spectrum and I just got back from WDW with him a week ago. We visited the Guest Relations center at the entrance to our first park (DHS) and spoke with a cast member. They were very understanding and with very little hassle provided us with a GAC that was valid for our whole trip at any park. This was a God Send for us!!! I swear it saved our trip and helped us to have a wonderful vacation. I can promise you that without this and the understanding Cast Members we would have never had the smooth relaxed time we had.

 

[SueM in MN]

As for Transitions, There is someone on this board who created a transition book for their Special needs child. I think I saw it on the DISability board here. It was phenomenal. All you need, ( again my opinion) when you have a kid like our sons are proper tools to navigate life with. Toys for waiting in lines, snacks for bus rides, video's for night time transitional issues, etc. I think the best place for a kid with Sensory issues is Disney. Seriously. I hope I managed to cheer you up. Know I am going through exactly what you are, only my son is alittle younger. Hugs.

The disABILITIES Board was where you found it.
There is a link in my signature to the disABILITIES FAQs thread.
Post #6 of that thread is about Guest Assistance Cards (GACs), including using a stroller as a wheelchair.
Post #2 starts out with information about renting wheelchairs and ECVs, but in the last past of that post, there is information about special needs strollers. This includes links to places you can rent one.
Post #3 has links to information and hints in past threads, listed under different headings. There is a section about Autism and the one that has the transition book information you mentioned is in the section headed, Communication Devices, PECS.

 

[disneymom2one]

I don't have a lot to say other than to chime in and say there is hope. We have one daughter - with Asperger's and a few other issues. She's been going to WDW since she was three and she's now 14. It's her absolute favorite place in the world (ours too). She still doesn't ride everything and has a big thing about boats - so boat transportation is out. Still, our visits to WDW have always been magical -especially when we relax and take things at her pace. She used a stroller or a wheelchair up until about two years ago and it was a huge help. She was able to have a "safe place" where she could relax when things go to be too much. We've also used the GAC for years. It really made our trips - especially when she was younger.

I'll add that our daughter is on the extreme high functioning end. At 14, she's student council vice president (her speech was about autism and how much she had overcome) and is about 1 point away from straight A's this quarter. She's grown leaps and bounds in the past few years and I attribute much of that to the confidence she gained during our WDW trips. It gave her a place to be herself and grow at her own pace.

 

[teriyaki]

I felt like I was having a flashback as I read your post. I have 14 year old twin DDs, one with autism. 10 years ago none of my friends or family knew what autism was. She wasn't diagnosed until almost 4, not potty trained until 6 for #1, and her only language was echolalic (every Disney video, lol.) She, too would cry if I took a different route home, walked a different direction than usual, or (we live 25 miles from Disneyland) if we went on rides in a different order than the very first time we went to Dland. She loved Dland so much that we ordered the WDW vacation video and she watched it over & over till she begged to go. When she nagged to go, we told her the airplane bathrooms weren't big enough to change a #2 pull-up, so she needed to be able to tell us in time to get to the potty. By the time we went, when the girls were almost 8, she was able to go in the potty.

Take off and landing were hard on her, but other than that, she was a trouper. She was really looking forward to it, though, and that may have been the key. She had the layouts of the parks emblazoned on her little brain, and had circled all the things she wanted to do. Her sister talked about it all the time, too, so she was totally obsessed by the time we went. Used the GAC and had to take her inside a store during the fireworks, but she was great.

Hang in there. It's really hard not the compare your kids when you have an NT older (or twin) child and know perfectly well what he or she was ready for at the same age.

Laurie

 

[rie'smom]

OP, I haven't dealt with your issues but wanted to say that I admire your honesty. I want to suggest that you might want to think about renting a FT. Wilderness cabin. That way if your son has a meltdown, you are in a private place and won't have to worry about disturbing other guests. It might help you to relax a bit about the trip. If your son needs quiet time, the bedroom can be closed off from the rest of the unit.

I hope your trip is wonderful.