Special Needs Child Vent

[JamesMom]

Please don't judge me, but I have to vent. I am getting very frustrated with my special needs son. It has been building for a while but the straw is the Disney Pin Code I got. I called, got the room (see siggie) and am making plans, but... I don't think we can go because of you know who. *sigh*

I have 2 children - a first grader who is your average boy and my special needs four year old, John.

John has Sensory Intergration Disorder, which is on the LOW end of the Austism spectrum and is sensitive to sounds, texture, and thrives on routine. He also has a speech delay, many cannot understand what he says and his vocabulary is limited - like a 2 year old - and refuses toilet training at the moment. He has been in therapy [speech, OT, PT and psych] since 2 years old and currently is in special ed at school and is doing remarkably well, but... he isn't ready for Disney.

I am so frustrated. I remember my DS7 at this age and we went to Sea World and he did great - while the youngest was throwing tantrums at 1 am because his bed wasn't his crib at home. DS7 did fantastic on a Mom and son trip last Dec, while Hubby took vacation so he could watch the youngest at home. This past June we went for 2 nights at Great Wolf Lodge, 30 minutes from us. We slept at home the 2nd night because John wanted to go home and to avoid a meltdown - we left and came back the next morning. I have had to physically restrain him (picking up and carrying him all the while he is kicking and screaming) out of our local pool because he refused to leave when it was time - not so bad with a 2 year old, but embarrassing with a four year old.

I forsee total meltdowns on the airplane when John can't get off, or on rides, or in the hotel room when he can't go 'home' exactly when he wants to. Or the looks from other parents when my son is still in pull ups at a month shy of his 5th birthday. Or not being able to understand what he says. Or tantrums in resturants and rides when has to 'wait'. He is a 2 year old trapped in the body of an almost 5 year old and it's hard to accept or communicate to others.

I just wanted to vent. I want to plan a fun family vacation but the youngest is holding us back and I can't help but feel a tiny bit of resentment. I want my youngest to act like my oldest. Now, my oldest isn't perfect by any stretch of the imagination, but he can at least behave within reason. I took my son on a cub scout camping trip last weekend - we had a blast. I would love to do the same for our family - but don't dare with my youngest.

The trip doesn't need to be finalized until March. Here's hoping he matures rapidily


Sigh, thanks for listening.

 

[worm761]

First off...
Second~ Do you get any type of respite care? It sounds like maybe you need some. Your younger DS is not ready for Disney just yet. And please, stop comparing the two kids. DS5 will never be like DS7. It just won't happen. You need to accept that. Do you seek any counseling for yourself? It sounds to me like you have yet to grieve for the kid you thought you had. Until you do, you won't get past this. I feel for you. I really do. My son is not anywhere as "bad" as yours. He has Asperger's. So I do understand to some degree what you are going through. Is there someone that could keep DS5 while you, hubby, and DS7 go on vacation? It seems that you guys are taking separate vacations and that you need some time together. If you just need someone to talk to, feel free to PM me. I am sorry you are going through this.

 

[brymolmom]

I'm so sorry and GLAD you came here to vent. Sometimes it helps just a tiny bit to get things said (or written).

Now I am not in your house so I'm just totally throwing this out there from the outside looking in - but couldn't you possibly do it and just know you'll have to adjust based on how John's doing? If you go look at the DISabilitities group there are a ton of parents with full-autistic kids who are able to enjoy WDW. I would think that maybe a child on the low-end spectrum side could do it maybe with some accomodations or setting a 'routine' or something!!?? Again, i'm not in your household so I'm just speculating. And if you're going to go and have a horrible time it wouldn't be worth it. But at least on John's bad days his older brother plus one parent could be out having fun while John and other parent stay in the room or something.

I have a child with very mild Aspergers - so I have a slight clue what some of the things you endure. It is not easy. One thing that I do for my child but not sure if it would help or hurt in your case is try to expose him to more of this type of situation (different routine, etc.) because the more he is exposed to it, even tho it is not pleasant at first, gets him more used to it. Could you try going to a local amusement park a few times now to get him used to the 'getting of the ride at the end of it' and then 'getting back in line to wait again' part of things?

Anyway - look at the DISabilities board and I'm sure there is a whole bunch of advice from parents with kids like John that might help you out to get to WDW - if not this time around, maybe next time!

Hang in there!

 

[Disneyadore]

I really cant give you any advise but many

Not to be noisy but maybe there are loving grandparents that would take care of your son for a few days and spoil him rotten?
This could take a little bit of the burden for your family and your son and grandparents could have a great time.

 

[woodkins]

First of all Hugs to you! Know that you are not alone. I am mom to a 7 yr old girl with Sensory Integration Disorder and Tourette Syndrome. It is not an easy road and I have felt the way you expressed many times. She is my only child so I don't have anything to compare it to which may somehow make it easier. Please know that it does get better...therapy does work! For my daughter things "clicked" for her when she was 4-5 yrs old. We still have clothing "issues" and still have lots of things that are good and not good. She is in a "regular" education school with no interventions at all and is at the top of her second grade class. Believe me if you had asked me at age 3 & 4 where she would be at age 7 this is not what I would have predicted LOL. We did speech, OT, brushing protocols, theraputic listening programs and dietary changes from about age 15 mos. Some therapies worked better than others and some were good for a while and then she needed others

Try to take time for yourself, you may even want to speak to a therapist, social worker or clergy for yourself. It is very overwhelming to be a caregiver to a special needs child and sometimes it helps to have a non family/friend who you can speak to from your heart without fear of judgement. If you don't take care of yourself you can't take care of your kids.

Some tips that helped make travel easier for us was lots of prep: explain and talk about everything that is going to happen, show pictures of the airplane, hotel, rooms etc. Bring your own blankets, pillows, stuffed animals etc. If he becomes overstimulated easily you can get a stroller wheelchair pass so that the stroller can become a safe place for him to retreat to (my dd would pull the hood way over so that she was hidden inside). 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. Try to bring things he likes to distract him (books, bubbles, coloring etc). If he will tolerate them you can let him wear earmuffs or something to block out the noise. My dd likes to wear her ipod with calming music to help her shut out outside noises when she needs to. Give lots of breaks for time to run, play, jump and get all of the sensory inputs that he needs. At home my dd needs to jump on her trampoline alot for the input it provides her. We try to get her swimming every day of our trip, take breaks to let her play in the water features and playgrounds and decompress. Theme parks can be overwhelming to all kids, but for sensory kids they can be overload.

You can pm me if you have questions or just need to vent to someone who is living it as well.
Hang in there....Krysta

 

[crisi]

Hugs as well.

Its a hard thing for a mother to admit that she loves her kids, but she resents them and doesn't always like them. Hard to especially when that kid is special needs and so none of it is his fault.

Since I started posting here, before as well, but especially since, I try and remember when I see a kid in full meltdown at Disney that not all of them are spoiled brats with horrible parents - that a lot of them do have special needs - and that until I have walked a mile in the parents shoes, I shouldn't make snap judgments about the behavior of their kids - and just be thankful I have my own shoes to walk in. Thank you for that. Sharing like you have. Its made me a better person.

 

[a1tinkfans]

I am glad you felt comfortable enough to vent!

Have you thought about seeking out counseling for yourself to deal with the issues of frustration? resentment?
It sounds like you need an outlet to "talk" about and then "deal" with the fact that your son IS who he is and YOU cannot change that, so accepting it will make it easier for BOTH of you. Kids do pick up on this.... I can hear the frustration in your post and I am just torn with my own emotions and will not therefore judge you/r vent.

Best of Luck with your PRECIOUS child/ren. How BLESSED we are to have them!

 

[princessmom29]

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.

 

[JamesMom]

Thanks guys. Your kind words have brought me to tears this morning.

Woodkins - you sound like the sister I didn't know I had - can totally relate to what you said! Glad to know I'm not alone

My mom is in an alzehiemers care unit and my in-laws, medical professionals, work so dropping any kids off at Nana's isn't happening just yet.

I'll have to check out the DISabilities forum - totally unaware that it existed - thanks!

We do adjust for John's perculiarities whenever we go out. Sometimes I think it is unfair to my oldest to make so many accomodations which is why we went to Disney last year and are involved in scouting together - something just for him and don't have to hold back because of John.

Like all kids, John has his good days and we have great times - he loves Halloween and we are truly enjoying the holiday so far (except for the costume he picked out is scatchy so off to find another one)

I forsee that if we do make it to Disney it will be a John and Mom trip coupled with a Dad and James trip where we happen to sleep in the same resort. Then, I can go at John's pace and James isn't forced to slow down.

Sometimes, John does surprise us. He takes the school bus this year and I had many sleepless nights wondering if he was going to freak out. But he got right on it like a trooper and enjoys it. Knock me over with a feather when that happened! lol. He had been seeing his friends ride that bus last year so he was already used to it. Maybe we need to start hanging out at the airport, lol.

I'm just having a bad spell right now. John had an ear infection (after the flu) that left his butt raw after the course of antiboitics. His refusal to use the toilet isn't helping. The wrestling matches to keep his butt clean every couple of hours is wearing me down and putting a damper on my outlook.

BTW - about toilet training... His verbal skills have improved enough that he knows what to do, but the latest illness have made toileting painful so out the window. right before this happened we put Great Wolf Lodge as a reward for #2 success, his favorite place to go, talks about it constantly -- but that didn't get him on the bowl. We'll try again after his butt heals.

We have time and if we dont' go, it's not the end of the world. It'll be there later. Thanks for listening.

 

[shilomoon]

I totally understand how you feel. My son is now almost 7 and has sensory integration/autism. My youngest will be 5 and is NT. I've put off taking the kids to Disney because i knew DS6 wouldn't be able to handle it.

I can tell you that at age 4 my son was the same way. There was no way he was getting on a plane and we could not go away from home for more than a day because all he would talk about was going home. I will tell you that it gotten a little easier as he's gotten older. We are finally planning a trip to go this July and we are going to fly - god help us.

I pray that with time this will become somewhat easier for you!

 

[seashoreCM]

Toilet training will continue to be difficult as long as he is in pain shortly before, during, and/or shortly thereafter, for example if you have to swab his butt with alcohol.

Meanwhile, what would happen if you decide it was toilet time, took him into the bathroom, and stayed there not saying a word (except to answer questions quietly) and he had to stay there with you as long as needed?

To size up how appropriate a Disney vacation is for now, think of what it would be like to wear your parent hat all the time which means you can never wear your park guest hat.

Family hints: http://www.cockam.com/family.htm

 

[ncmickeyluvr]

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.

 

[3boys4me]

 

[eeyorefan74]

Just wanted to let you know I'll say a prayer for your family that things will settle down. I also wanted to thank you for being so open and honest. I too, have trouble with comparing my youngest, who has some developmental issues, with my oldest, who caught on to everything very quickly. It's unbelievable frustrating, even though you know it's not their fault. We haven't been to Disney in a couple of years and I'd love to go this Christmas, but I know DD's just not ready.

I don't think moms do each other any favors when they act like everything's fine when they're really hurting and stressed. Everyone has days when they love their kids, but don't like their behavior/issues. Sometimes it just helps to know you're not the only one. Hang in there and I bet you'll be in Disney before you know it!

 

[worm761]

Another thought.... to help prepare John for Disney....look at tons of pictures of the resort you will be staying at so he knows what is coming. Also, youtube.com is your friend. Look up everything Disney World on there and show your son. It will help for him to know that the characters are HUGE compared to the small creatures he sees on tv. Show him complete rides so he knows what to expect. Kids like this don't like the unexpected. If you start prepping him now you might be able to go. Don't forget things like the bus rides and walking. Also remember, Disney is very very loud so try to find something to buffer the noise for him. Now is the time to look. What about ear muffs? They stifle the noise without blocking it completely off. Something that has helped a lot of special needs kids is a schedule. make one for every day. include pictures since he will be able to understand those better.
Example:
Day one: get up! go to airport. get on plane. ride Magical Express to Disney World. check in to hotel. see room.
Day two: get up! eat breakfast. wait for bus to MK. wait to get into MK. walk down Main St. Ride Dumbo. Ride Small World.
Just make sure you have small pictures to go with everything. make a little spiral bound notebook and give him a pencil/pen to check off each thing as you do it. I have found that lists really help DS since he can see what will happen next. And a visual cue would be good for your DS.

 

[nursegirl]

Can totally hear you and you are a good mommy for getting the feelings out and venting. Being a parent is such hard work and with a special needs little guy its tiring on a good day and when someone is sick its beyond exhausting. Thinking of you and sending you good vibes.

 

[jacksmomma]

BTW - about toilet training... His verbal skills have improved enough that he knows what to do, but the latest illness have made toileting painful so out the window. right before this happened we put Great Wolf Lodge as a reward for #2 success, his favorite place to go, talks about it constantly -- but that didn't get him on the bowl. We'll try again after his butt heals.

We have time and if we dont' go, it's not the end of the world. It'll be there later. Thanks for listening.

A friend of mine has a child on the spectrum she found a book at the library about potty training a child with Autism and or speech delays. It seemed to have some great ideas. Maybe it will help you.

 

[Cedarmom]

One suggestion that a friend of mine uses to get her severely autistic used to new situations is to make them a book w/ pictures. Call it John's Disney Book and show it too him every day multiple times. Like Angela suggested, things like, "First, we're going to the airport" Have a pic of the airport. There are lots of people at the airport (pic of ppl in the airport). We'll have to wait in line to get our tickets (pic of ticket counter), etc, etc, etc. Walk him through it step by step so he'll know exactly what to expect.

 

[poohnpigletCA]

Hugs to you.
We just returned from an 11 day trip to the world with our typically developing 8 yo and special needs 5 yo. The DISabilities boards has so many helpful tips. We used the Guest Assistance Card and also Tourguide Mikes website. He lists park days as red(crowded), yellow, and green. We pre-planned all of our days and stayed only in green parks. At Disney you can also use your stroller as a wheelchair. This is so helpful because it gives a nice quite place for your child. We had a wonderful time. Good Luck.

 

[mrsksomeday]

The DISablities board here is a great resource. The Passporter Open Mouse is a great book for special needs issues at WDW.

Are you familiar with the GAC (Guest Assistance Card)? There is information here post #6. It can help with wait times by being able to wait in an alternate area, etc.

I agree with worm761 about a schedule with pictures, social stories to explain to him what you are going to do that day, you can include pictures about the airport, the busses, your resort, and the parks. You can also have stories about how to deal with problems that come up such as waits for rides, ride closures, rain, etc. and how you can deal with it.

I put information on "help cards" I made. Here is an example:

I know that isn't really easy to read.

The one on the left says "Sometimes in Disney World it will rian. It might be for a short time or it might rain all day. We might have to do different things when it rains. The things we can do: Talk to adults, wear a raincoat, go inside, come back later."

The one on the right says:

"Sometimes in Disney world things won't go my way and I will get frustrated. There are things I can do: Talk to adults, count, close my eyes and breath deeply, leave the park. "

These are just examples, you could make yours to suit John.

As for people at the parks staring at you if there is a meltdown or the fact that he wears pullups, there are inconsiderate people everywhere. We can't let them ruin our vacations. Just remember this, they are strangers and you will probably never see them again.

I understand you are frustrated, it was good you could get your feelings out here .