Nathan’s Birthday

Nathan had his birthday and enjoyed a cake made to look like R2-D2 (a successful rendition, if I do say so myself–of course, took most of Saturday to make the cake.)

We didn’t do a big party. Our house is rather small for one so we just had my parents over for cake, ice cream and presents. Nathan received from MaMaw a remote controlled R2-D2 and was very, very happy. It was the big “it” present he wanted. I bought him a Toy Story 3 poster for the boys’ room, LEGOs, a Slinky-Dog Pez dispenser (he’s into Pez) and some Mighty Beans (they’re like Weebles only smaller and meant to roll over top to tail). 

He had a wonderful birthday and loved his presents!

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Disney World 2010

We went on vacation in DW again this year and had a ball! Of course, we got the guest passes this year, spent time in the pool and did some meet-and-greets with Disney characters. Last year, I went super prepared and yet, on the first day, our daughter got lost in Downtown Disney at the LEGO store. This year, we went super-duper prepared and my 11 year-old had a disposable cell phone just in case she got separated from us this year.

We managed not to lose her this time but we did lose Nathan momentarily.

We were waiting for my father-in-law to catch up with us and I had Peter while my husband had Nathan. My husband must have let go of Nathan’s hand for a moment or something (Nathan had been doing really well staying with us so I didn’t leash him like I had Peter) and Nathan ran off to look at a toy display in Tomorrowland. My husband started running around calling for him but I couldn’t move away from Peter, I could only look around a limited area and wait to see if Nathan came back into view. My husband found Nathan within a minute but it was a scary, long minute.

Nathan is reading and speaking fairly well although it is still difficult to understand him so if a castmember had found him and tried to help him they likely would have had problems understanding him. He’s also rather gullible and we worry that, like many kids his age, he wouldn’t understand danger or a dangerous person until it was too late.

Peter was more sensitive to airplanes and helicopters this year so I had to keep covering his ears and telling him that the airplane or helicopter was “going away.” We are suspicious that he may have perfect pitch–he’s not scared of airplanes or helicopters, he just hates the sounds they make. We’re going to try piano lessons for him this fall with someone who has taught special needs children before.

My rules from last year’s trip to Disney World still stand. We did nearly everything the same way except for the latter part of the week when the Guest Passes became almost moot because our daughter ended up on crutches and needed a wheel chair in the park. She smacked her ankle on the pool deck at the timeshare  when jumping into the pool and bruised it considerably. X-rays showed that it wasn’t broken but an emergency room doctor put it in a brace and put her in crutches to protect the ankle.

It’s become a running joke with my daughter that she is only allowed to go the emergency room once every two years and so far she has kept or exceeded that schedule since birth. So I told her when were were leaving the emergency center after midnight the night she hurt herself that she had made her quota and she couldn’t go to the emergency room until 2012. She didn’t find that funny.

But her being in a wheelchair did mean that pulling out the Guest Passes became superfluous. Most of the time, Disney Castmembers just waived us through although some asked for the Guest Passes.

A few new tips for visiting Disney:

1. Make sure you take breaks such as going to the pool at the hotel or resort. Some children with autism can become overwhelmed and taking a break from Disney won’t cause the world to stop spinning. Also, there are other touristy things to do in Orlando that can help give your child downtime he or she needs.

2. Don’t try to cram everything into one day. I know we are tempted to do as much as possible because we want to get the most bang for our buck but really, if your child wants to do Peter Pan’s Flight for the fifth time that day, is he having fun? Yes? Then, by all means, skip It’s a Small World and do Peter Pan’s Flight for the fifth time.

3. Don’t be afraid to explain to staff that your child is autistic. One castmember working with the Buzz Lightyear character had a daughter with PDD-NOS. She told us that the Guest Passes would work at the character halls such as the one in EPCOT. When we got over to EPCOT we found that it was true! We were able to meet and take pictures with the major Disney characters quickly and easily.

The Guest Pass doesn’t necessarily work if you run into a character on the street (so to speak) but the castmember told us to ask anyway. We saw Woody and Jessie from Toy Story over in the Magic Kingdom and there was a line. Nathan really wanted to meet Woody so I asked and the castmember told me that they the Guest Passes only worked on the indoor character meets. I looked at the line and thought “there is no way Peter will hang out in that long of a line” so I said “thanks, the boys have autism and probably won’t wait so I think we’ll have to pass then” and turned away. The same castmember then followed me over to where my husband had been waiting and told me that they were going to take a break for a few minutes but that they would ask the next family in line if we could cut in front of them. She did as promised and the family was very kind and let us go in front of them. My husband went over and thanked them and explained a little about the boys. Peter and Nathan both got to meet and get pictures with Woody and Jessie and we are grateful to the family who was so kind as to let us go in front of them when they had patiently waited in line already for at least ten or fifteen minutes (in the heat!).

We also had an angel of a woman help us out one day. A DW retiree came in with us on the ferry boat (the trams were shut down that day) and walked with us into the park. She asked about Peter (he obviously doesn’t always respond to people when they talk to him) and I explained about his autism. She continued to follow us into the park (and at the time, I didn’t know she was a retiree) so we were a little puzzled why this woman was sticking with us. I know I kept looking around for family members. Finally she said she would get Gabrielle’s wheelchair for us and I thought she meant pick it up after we paid for it. But then she went on ahead and we thought she had left (her first language was not English so she had a heavy accent and I couldn’t always make out what she was saying). Next thing we knew, she had gotten us a courtesy wheelchair in her name because she was a DW retiree and then wished us a good day. She left, went out the exit and back toward the ferry boat! We were astonished and humbled by this woman’s kindness. I don’t know if she spent some of day waiting at DW entrances to do a kind deed for someone but she seemed to come into the park just long enough to do a good deed for us and then leave! God bless her!

5. Be prepared for your child to change his or her likes from one year to the next or one day to the next. Peter seemed to enjoy several rides last year or, at least, didn’t react one way or another. This year, he was very opinionated about some of the rides and expressed a dislike or a reluctance for some rides that we thought he liked or was indifferent to the previous year–such as Pirates of the Caribbean. He went on Pirates with us but I had to sit close to him and cover his ears several times.

6. Take little breaks that require you to rest and sit. Extended walking can be difficult for children with special needs. Nathan didn’t need the stroller this year but we had to keep things a little slow for him because he can’t walk as fast. He got tired several times and told me his feet were “hot” so we would stop and do a ride where we had to sit just to give him a break. His leg muscles are just not as well-developed as they should be for his age and though we are working on it, it may take youth rec soccer or something like it that requires a lot of running and movement in the legs.

Overall, round two was great. Will we do it again next year? We are seriously considering it. Peter and Nathan seem to showed marked improvements in a number of areas–especially Peter. Peter’s showing a significant change in speech such as adding adjectives, answering questions and even cracking some simple jokes.
Two examples: today, he made a foamy, greasy mess in a bowl and I said, “What is this?” and he replied, “Butter.” I could see then that it was melted butter that had solidified and that he must have microwaved a stick of butter or something while I was making beds. I didn’t see the bowl until much later after he had made several other messes and two dirty diapers (yeah, we’re still dealing with this with him). Also, later he covered his head with a towel and said, “Mommy, I’m a ghost.” Which cracked me up–still does, lol!

Cranialstenosis or Cranial Synostosis–Update

Doctor’s are continuing to monitor Peter for pressure in the brain but it has become a little easier. Before, we could only watch for warning signs such as incontinence or headaches (which are nearly impossible to diagnose if the patient can’t answer questions) so we were very anxious about our ability to figure out if Peter was having a problem and whether it was due to the stenosis or his autism.

Last year, when we saw Dr. Tye and the cranio-facial team at VCU, we were told to have Peter’s eyes checked. Apparently, researchers found that pressure on the brain shows up in the optic nerve first–causing it to swell. So now we take Peter to see a VCU eye doctor (Dr. Mary Tucker–who is wonderful!) who checks his optic nerve for swelling and gives him a regular eye exam as well. So far he has had a clean bill of health.

We still have to keep an eye on symptoms for intracranial pressure but Peter responds well to an eye exam and has a check up once a year to check his eyesight and his optic nerve.

I’m so inconsistent!

I apologize for being far more inconsistent than I thought! The last post here was in February(!) and so much has happened since.

Nathan improves daily and we have seen an explosion in speech, pretend play and social skills. We suspect that he will always have some autistic characteristics but he is doing very well.

Peter is improving too! While his speech abilities are still on the level of a maybe a 2-year old, he is using pronouns correctly about 75 percent of the time and he is beginning to use adjectives in describing things such as, “I want water, cold water. I want cold water.” (This was a request just from this week.)

We also went to Disney World again this year and I will post more on this later today or tomorrow. Nathan’s birthday is Monday and I want to write more about how excited he is about this as well as his requests for toys and such for his birthday presents.