Rett Syndrome and questions

[sarahsmom73]

Hi everyone!

My almost 3 year old daughter was diagnosed with Rett Syndrome in September 08'. We have traveled to WDW prior to her diagnosis.Fortunately she is doing really well with the exception of her mobility.She is not yet able to walk let alone stand unassisted. Now that she is getting bigger and heavier I could use some advice.

I am really nervous about getting priority boarding for the plane and getting a GAC for stroller use at the world because anyone who looks at her thinks she is "typical". So few people know anything about Rett Syndrome, I often get "She looks normal". She is dependent on us for all of her care from mobility to feeding.

For all of you experts out there...

I can take her through security in her special needs stroller? It looks like a normal stroller but with more support.

We are flying Southwest. I plan to gate check her stroller. If we get and A pass I really wouldn't need priority boarding would I? (I will also have my 7 year old with me).

Should I think about a GAC card to use her stroller as a wheel chair?


I am sure I will get "The looks"from people.I just know I can't carry her 28.2 lb body forever without my back killing me. I am very forth coming about her condition.

Is there any documentation I should bring?

Thanks so much for your help!

 

[fottafamily05]

I would not bring any kind of documentation...I dont think you need to "prove" there is something wrong with your child. I too have a child that looks normal and we get alot questions as to what is wrong. Our son is deaf with a Cochlear Implant and does AMAZINGLY well. Of course the situations are a little different but I feel you shouldnt have to justify anything to anyone else especially when it comes to your child (at least that is how we feel)

As far as southwest (we always fly them) they are great about the pre-boarding and whatnot. If you dont get an "A" boarding spot I would just mention to them that you feel you need a blue sleeve (this is what grants you boarding prior to everyone else)

I would highly recommend getting a GAC for your daughter. It will make your trip run so much more smoother and be more enjoyable for not only you but her as well. Most people dont even notice if you have a GAC anyway. I would just go and have a great time!!!

Good Luck and most of all have a fun time.

 

[BeckyScott]

We flew SouthWest with an A spot and it was no trouble at all. The only thing to maybe consider is when they do the line-up at the terminal it can get a little crowded and there is some waiting.

We didn't need any documentation, but for some reason I packed some anyway. (keep in mind I packed like we were going off to a deserted island for six months)

I would do "stroller as wheelchair", definately. It would be easier to do it on arrival, get the tag for the chair, even as a "just in case" situation. What you really don't want to do is not get one, be at like the far side of Epcot and realize you do need it, and have to haul all the way back to get one.

 

[SueM in MN]

If you were flying with reserves seats, I would suggest deciding whether preboarding would make your experience better or worse.
For example, preboarding would allow you to walk in when there are less people and get settled before the plane is full. The downside if that is that you will be on the plane longer.
Since you are flying SW, I would preboard so you get your best selection of seats that meet your needs.

For security, she will need to get out of her stroller and walk thru the scanner OR she can stay in the stroller and they will take her aside and do a pat down and scan with a handheld scanner. This is what they do for anyone who is not able to walk thru the scanner. I will add more info when I get home since I am typing on my iPod and it's hard to do a long message

If you have not looked at it, I would also suggest reading post #6 of the disABILITIES FAQs. It is all about GACs and can help you to decide what might be helpful.

 

[visitingapril09]

First, big hugs to you and your brave girl. I am the mom of a son with a neurodegenerative disease, so I understand.

As for what other people think, please don't let that sway what is going to make your flight and visit the most comfortable. You are dealing with a very real issue. Our son uses his wheelchair, can walk and even play and move quick for a few minutes, and then can't even stand on his own. We use priority boarding as his wheelchair doesn't fit down the aisle so we will assist him in walking from the door to his seat etc before others board, it just gives him more space AND you don't have people staring at you when you are trying to get your child settled. As for the Stroller as a Chair, definately. You have every need to do that.

 

[sarahsmom73]

Thanks everyone! I think I know what I need to do! You guys are awesome!