Mild CP question

[DrMomof3]

I'm still trying to wrap my head around everything so I hope my questions make sense!

My 2 year old was just diagnosed (today!) with mild CP. He was born at 34 weeks (due to low amniotic fluid levels likely from placental insufficiency) and spent a week in the NICU. He had mild temperature regulation issues and some jaundice but basically did well. He had some mild motor delays during his 1st year of life which were dismissed as "preemie issues." When he hadn't ever pulled to stand at his 1 year visit, we started to worry. We called Early Intervention and he started services. Six months into services the PT recommended orthotics. We saw the physiatrist 2 weeks ago who noted a left-sided weakness and recommended a neuro eval. The neuro feels that he must have had a brain bleed - either before birth or just after - and he has mild CP.
Zachary is almost 27 months. He can walk (with just a mild foot drop) but tires very quickly. He then wants to be carried. He's very tall for his age and weighs just over 30 lbs. He's been to Disney before he could walk and we used a combination of baby carrier and stroller. To the casual observer Zachary is totally and completely normal.
We're going to Disney in late August. I was planning to NOT bring the baby carrier because Zachary is getting quite heavy for me to carry around (I'm only 5'2" and fairly petite). I'm very worried about having to carry him while waiting in lines (in the 95+ degree heat!).
We're new to all of this and, as I said, still processing. I'd love advice from anyone! Do you think it would be helpful to have the stroller in line so he can sit? I do realize that we are SO lucky that his disability is very mild and I definitely don't want to "take advantage" of the system or anything. Since he looks so normal, most people wouldn't know that he has difficulties. I just want to make things enjoyable and easy for him. (He's a 3rd child and he wants to do whatever his big brother and sister do so he gets a little frustrated sometimes).
Any other advice for Disney or in general?

Thank you SO much for any advice!
Amanda

 

[jj548548]

I would recommend getting a guest assistance card (GAC) form guest relations when you get into the first park you visit. You can request to use your stroller as a wheelchair for you child. I have had to do something like this every time I visit Disney. I have had major problems with my knees and must use a walker to get around being a dad with a young child I could not use my walker and push a stroller around. So I had to get a GAC to use the stroller as a wheelchair for my use. I have had very little problems from other guest when doing this and neither my child or me look like we need this service. Some people will ask way you get special treatment but if you take a moment to explain it to the they are normally very understanding. I hope this helps.

 

[Eeyore5]

Don't worry, you aren't "taking advantage." The GAC is there to help people with special needs enjoy the park. The wheelchair as a stroller option will probably be the only thing he needs. You still wait in line like everyone else.If people in line ask, just say he has a mild disability that affects walking. I have mild CP too. My gait is fairly normal and to an untrained person, I just look kinda clumsy. I am affected in all four limbs. My handwriting is barely legible. The best thing my parents did for me is teach me to advocate for what I need and be proud of who I am. PM me is you have any questions about dealing with this disability. I would be happy to help you. In addition to having a disability, I an an ECSE Teacher working in Early Intervention - best job it the world.

 

[DrMomof3]

Thank you both! I'm very grateful for the information!!!
We're lucky that Zachary has already been getting plenty of services due to his delays. Now we have a better understanding of his diagnosis. I really happy to know that we can use the stroller as a wheelchair because it will make the trip more enjoyable for him and for me!

Amanda

 

[SueM in MN]

You can find more information about Guest Assistance Cards and using a stroller as a wheelchair in post #6 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature to get there.

Basically the GAC for using the stroller as a wheelchair or the sticker that allows the same thing lets you take the stroller in lines and attractions with you where ever a wheelchair is allowed. All the lines at AK and the Studio were constructed to be wheelchair accessible in the main line as much as possible (these are called Mainstream Lines). Epcot and MK have older attractions, so not all were able to be made accessible, but the majority are Mainstream.

The only differences compared to a wheelchair are:

• in some shows, he may sit too low in the stroller, so will need to get out and sit in your lap or in a theater seat.
• some attractions have wheelchair accessible ride cars that the stroller will not fit into.
• although the GAC is for the 4 theme parks, most bus drivers will see the sticker and allow the stroller to be loaded thru the back door. Unless it is a special needs stroller designed for transit, the stroller will need to be folded on the bus.

 

[DrMomof3]

Thanks for the info. I did look over that informative thread already!
He's perfectly capable of sitting in a regular seat for theater shows (as much as any 2 year old is capable of sitting for any period of time ). It's the standing in line that is hard for him.
This has been very helpful. We're definitely going to get a GAC for him to make life a little easier for everyone.

Amanda

 

[DannysMom]

I just wanted to wish you a great trip. My oldest was a 26 week preemie & also has mild CP. He has been to Disney 4 times so far, the first time just before he turned 3.

We have always gotten him a GAC & used his stroller as a wheelchair. There is no way he could stand to wait in lines, but seated we manage. There were a few times that a line seemed not that long that we parked the stroller & waited in standby, it was usually a mistake. Most memorable for me was Peter Pan, the line just stopped for a good 20 minutes or so & of course he just wanted to hang on mom, my back was killing me. I was kinda grumpy w/ DH who insisted that we didn't need to use the GAC that time......

Be prepared if you go to the Land Pavillion in Epcot, you will be challenged several times by CMs. Strollers are generally not permitted there, but I've never had a problem after smiling & showing the stroller as wheelchair tag.

 

[DrMomof3]

Thank you for the great advice! I was wondering about the Land Pavilion and you answered my question before I even thought to ask it!
We went to Sesame Place last weekend and I got to carry Zachary in line for hours in 100 degree heat. Not nice!

Amanda

 

[DVC96]

Have a terrific trip! My 18 year old DD has mild CP,too but she is globally affected (speech, fine and gross motor, cognition, etc.) She can walk for very short distances but at 18, she is almost 5'7" and weighs as much as I do! We have gone to WDW twice a year with her since she was 1 and have tried it all - I remember those hot steamy days holding her in line - no fun!
We always get a wheelchair now and the GAC which has been a lifesaver. We will be there, too, from 8/6-8/21 - hope you have a wonderful time!

 

[KPeveler]

I second what everyone above said... I just wanted to reiterate that anytime you think "oh, I'll just carry him this once" - Don't. I used to think that I could just walk one line, and I inevitably ended up in the line where the ride broke! Definitely keep the stroller with you. Have a great trip!

 

[DrMomof3]

Have a terrific trip! My 18 year old DD has mild CP,too but she is globally affected (speech, fine and gross motor, cognition, etc.) She can walk for very short distances but at 18, she is almost 5'7" and weighs as much as I do! We have gone to WDW twice a year with her since she was 1 and have tried it all - I remember those hot steamy days holding her in line - no fun!
We always get a wheelchair now and the GAC which has been a lifesaver. We will be there, too, from 8/6-8/21 - hope you have a wonderful time!

Thank you! We'll be arriving just as you're leaving. I appreciate you taking the time to share your experiences.

I second what everyone above said... I just wanted to reiterate that anytime you think "oh, I'll just carry him this once" - Don't. I used to think that I could just walk one line, and I inevitably ended up in the line where the ride broke! Definitely keep the stroller with you. Have a great trip!

Thank you! I need to hear this as I have a tendency to "be a martyr" when it isn't necessary. Zachary is very tall for his age. He isn't overweight at all but he's still very heavy (especially for my 5'2" frame!).

Amanda

 

[rangermom]

Yor DS sounds just like my DS (4). He has mild CP and it is his left side that is affected and he wears orthotics. He is also our third adn tries very hard to keep up with his older brother adn sister. He does fairly well actually.

We have done WDW 3 times and DL 3 times. I have never used the GAC (because I am like you, don't want to seem like I am abusing the system, so I did not think he needed it since he could walk). But I think our next trip we will get it so that we can take his stroller in lines and other areas they are not allowed. I always end up carrying him and it is really hard on me.

We have a Maclaren Triumph. He does not need a stroller like the Major, but we really like the Triumph. Easy to push and to transport to adn from the hotel.

Thanks for posting this thread, since it helped me understand how the GAC be used for his particular needs.

 

[KPeveler]

A general note: So long as you do not lie or exaggerate your needs or the needs of your child, you are not "taking advantage." The GAC does not allow you to "take advantage" just by the way it is designed. If you go to Guest Services and are honest about what is needed, the system can work for you!

Never feel ashamed of asking for help! Disney will be very up front with you about their policies (such as renting a wheelchair for stamina or mobility needs), and they will do everything possible within those policies to help you!

 

[DrMomof3]

Yor DS sounds just like my DS (4). He has mild CP and it is his left side that is affected and he wears orthotics. He is also our third adn tries very hard to keep up with his older brother adn sister. He does fairly well actually.

We have done WDW 3 times and DL 3 times. I have never used the GAC (because I am like you, don't want to seem like I am abusing the system, so I did not think he needed it since he could walk). But I think our next trip we will get it so that we can take his stroller in lines and other areas they are not allowed. I always end up carrying him and it is really hard on me.

We have a Maclaren Triumph. He does not need a stroller like the Major, but we really like the Triumph. Easy to push and to transport to adn from the hotel.

Thanks for posting this thread, since it helped me understand how the GAC be used for his particular needs.

I'm so glad that my thread was helpful to you! And it's nice to meet someone else who is going through the same thing. Third children are definitely special!!! Like I said earlier, I tend towards being a martyr so I'm happy to get such great advice.

A general note: So long as you do not lie or exaggerate your needs or the needs of your child, you are not "taking advantage." The GAC does not allow you to "take advantage" just by the way it is designed. If you go to Guest Services and are honest about what is needed, the system can work for you!

Never feel ashamed of asking for help! Disney will be very up front with you about their policies (such as renting a wheelchair for stamina or mobility needs), and they will do everything possible within those policies to help you!

Thank you! I appreciate the point you make. I work in health care and see children with severe disabilities every day. I guess I feel a little guilty for asking for extra help when I know how lucky we are to have a child who is relatively able-bodied. I also realize that we don't need to struggle as much as we have in the past because help is available to us (Early Intervention, the GAC, etc.). I tend to be sensitive to the idea that others would look at our "normal" appearing 2 year old (he's very charming!) who is waiting in line in his stroller while their 2 year old needs to walk. While I know that my 2 year old can't stand/walk for prolonged periods of time, that isn't obvious to anyone else. It shouldn't matter what anyone else thinks but I'm human!
Of course my rational self realizes that carrying my 30+ lb child through Disney in 95+ degree heat isn't a viable option for me so I'll gladly ask for the appropriate amount of help! He probably won't have his orthotics before our trip which makes the seat even more important!

Amanda