Life with MS & EDS

February 3, 2010

Kindergarten Transition Meeting

Tomorrow is Little Sister’s kindergarten transition meeting, so in typical Ivy fashion, I started stressing about it a week ago and am now extremely stressed.  I spent most of my spare time gathering papers, writing notes and documenting her progress and lack of progress in key areas — cognitive, gross motor, fine motor, sensory, etc.  I have a one pager now with things I think they should know.  I even ran it by my mom-in-law who is a kindergarten teacher.  She gave me good questions to ask them, such as what will they do if she refuses to go to an assembly or gets upset during one, will they let her use a slant board or sit on a pillow, etc.

I find the whole evaluation process depressing.  It forces you to focus almost exclusively on your child’s negatives and lack of progress.  I want to acknowledge fantastic progress she has made in some areas, but that could threaten her access to services.  Therefore I’m forced to emphasize all of her problems and that has me in the dumps.

When I don’t have to compare her to other 5 year-olds, I think she’s doing pretty well, but throw her in with her peers and reality hits.  She’s still at least a year behind in most motor areas and her sensory issues keep intensifying (not that schools seem to care much about that, but it makes home life rough.)

Right now I need to focus on getting her services and an IEP.  Based on Section 602 of the Individuals with Disabilities Education Act (IDEA) (P.L. 108-446), there are 13 areas of disability that qualify a child for services and an Individual Education Plan (IEP):

  1. autism
  2. deaf/blind
  3. deafness
  4. hearing impaired
  5. mental retardation
  6. multiple disabilities
  7. orthopedic impairment
  8. serious emotional disturbance
  9. specific learning disabilities
  10. speech or language impairment
  11. traumatic brain injury
  12. visual impairment including blindness
  13. and other health impairment

Per the statute:

(3) Child with a disability.–
“(A) In general.–The term `child with a disability’ means a child–
“(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as `emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
“(ii) who, by reason thereof, needs special education and related services.
“(B) Child aged 3 through 9.–The term `child with a disability’ for a child aged 3 through 9 (or any subset of that age range, including ages 3 through 5), may, at the discretion of the State and the local educational agency, include a child–
“(i) experiencing developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures,
in 1 or more of the following areas: physical development; cognitive
development; communication development; social or emotional development; or adaptive development; and
“(ii) who, by reason thereof, needs special education and related services.

During our meeting with the committee last year, we were told that we’d have to focus on “other health impairment” since nothing else on the list really applies.  Although she wears DAFOs, her hypermobility is not significant enough to qualify as an “orthopedic impairment.”  Previously when fighting for services, like at the 3 year-old transition meeting, all we had was a nebulous diagnosis of “hypotonia” which is really a symptom, not a diagnosis, but at the time we didn’t know what was causing it.  Now at least we have a diagnosis – Little Sister has Ehlers-Danlos Syndrome.  We have a letter from a reputable genetics specialist stating that she will need life-long physical therapy to improve strength and avoid onset of arthritis.  It also documents her physical weaknesses.

Great, you’d think!  I have a detailed evaluation of Little Sister’s physical condition and a statement that therapy is necessary.  However, as we were told last year, this could all be written off as “medical” and not “educational.”  If they do not see enough evidence of this impacting her ability to learn, they don’t need to provide any services.  They’ll do their own evaluation to determine this.

Our problem is that there is a lot Little Sister can do for a short amount of time, but then won’t be able to repeat it even moments later.  She fatigues very quickly.  Another problem we had during the 3 year-old assessment was that they looked to see if she could do something, not the quality with which the task was accomplished.  Yes, she may be able to do a fine motor task, but they tended to ignore that she was struggling or not doing it appropriately.  She may have picked something up, for example, but many fingers were involved and her grasps were immature.  If this same standard is used during her upcoming evaluations, we’re in trouble.

Schools also do not seem concerned about her sensory problems, which if you read about our experiences in Disney World, you’ll know have become quite significant.  These are not going to come out during an evaluation process.  They have to be witnessed during regular life experiences.  Just wait until they have a loud assembly, a fire-drill alarm goes off, or she simply doesn’t get her way!  I’m told she is generally fine at school, but I did get to witness a typical Little Sister melt-down at school last week.  While I was sad that she was screaming, crying, and stamping her feet, I was secretly very glad her teacher got to see it.  What caused the tantrum?  There were two chairs of one style and one different one.  Another boy sat in the different one and she wanted that one, so she threw a fit.  That evening at her dance recital she refused to participate until the color dot she wanted to stand on was given to her.  We see this all of the time at home.  She threw a huge tantrum (that word probably isn’t even strong enough) a few days ago because Daddy gave her a bath instead of Mommy.  She doesn’t quite care that doing her baths is much harder for me.  Apparently it’s my job and changing the routine did not meet her approval.  I could go on, but you get the picture.  She probably isn’t going to be one of the “easy kids.”

Sorry for going on at length about stressing in advance of the meeting!  It’s not a good thing to stress during Girl Scout cookie season.  After a few thin mints, I thought it was better to write than continue eating!!  I know not much is going to happen tomorrow.  It’s a lot like opening arguments.  It’s a time to lay out the case and learn the process.  Then they’ll schedule evaluations, after which the real battle, I mean fun starts.

September 7, 2009

Feeling Blue

I’ve been trying to find time to organize my thoughts and actually sit down to write this post, but I’m either not near something to write with when my thoughts come together or my thoughts escape me when I am able to capture them.  The ideal time just isn’t happening, so I’ll make do with less than ideal.  Now if only the girls would entertain themselves long enough to stop interrupting my thoughts every sentence….

My MS has been under control.  For the most part I’m still benefiting from the Solumedrol/Prednisone experience last spring.  I’ve accepted the fact that my optic neuritis in my right eye is here to stay and that the vision will never improve to 100%.  While I’m not enjoying the Copaxone shots, they have become part of my routine and are going okay.  I’d still like to replace the arm shot location, but can’t think of another body part to use since I’ve already ditched the thighs.  Every now and again I’ll use an extra stomach shot or the side of my hips, but for the most part I just suck it up and deal with the arms.

Despite my physical health doing okay, I’ve been feeling blue most of the summer.  Little Sister has been extremely challenging the past few months.  Until now, I’ve always thought of myself as the parent of a child with a developmental delay.  She walked at 26 months and has had other motor-related delays.  In all of her evaluations for services, she always placed approximately 6 – 12 months behind.  I could handle that.  However, this past spring during her evaluation her motor skills and other abilities placed her at between 30 – 36 months old.  Chronologically she was 59 months old, so she’s now showing an overall delay of approximately 50%.  The scores themselves are between a 25% and a 75% delay, depending on the ability.  This struck me pretty hard.  I’ve known that she’s not where she should be for fine motor for a long time and have been saying this to the various therapists and administrative folks who have seen her.  I know that not writing letters or most shapes by 5 isn’t typical.  However, the tests finally caught up with me.  I suppose they finally expect more at 5 than prior to this and her scores just plummeted.  It’s not that she’s regressed or anything; it’s that she hasn’t progressed.

This together with her behavior has been a real challenge.  I’ve gone from being the parent of a child with delays to the parent of a special needs child, which for me is a very big distinction.  Before I could just pretend that she was about a year younger than she really was and that eventually she’d catch up or that being off a year wouldn’t matter in the long run.  I can’t do that anymore.  Her sensory issues have dramatically escalated.  For example, last summer we were able to take her to the circus, the movies, and other similar places.  This year we can’t even go out to a restaurant without a breakdown.  She flat out does not want to leave the house unless it’s to go to school, the family beach house, or her grandparents’ houses.  She cannot tolerate any loud noises, unless she’s making them.  Rooms need to be lit like broad daylight, regardless of the time of day.  Calling her eating style “picky” would be an overstatement.  Let’s not even get into how awful it’s been trying to potty train a 5 year old!

Speaking of potty training, I do finally have a name for the stomach problem both of our girls have.  It’s called Encopresis.   It’s a condition of chronic constipation, along with reflexive withholding of the stool (refusing to go to the potty and not even realizing that they have to poop.)  This was an “ah-ha” moment this week.  It’s nice to finally have a name for this and hopefully be able to track someone down who can help us with it.  Every doctor we’ve seen, including the pediatric gastroenterologist specialists we’ve taken them both to in two different major metropolitan areas has never once mentioned this to us.  They’ve given us the basic lectures about needing to have them do potty sits (“Every day, after dinner, have them sit on the potty for X number of minutes.” – Thanks, doc, that’s helpful….)  They’ve prescribed various doses of Miralax and FiberSure.  They’ve lectured us on making sure they are drinking enough, getting enough fiber, and so on.  However, what they fail to acknowledge is that this goes beyond typical constipation.  Neither girl even notices that they need to use the bathroom!  They don’t even feel it.  They’ve conditioned their bodies to completely ignore it!  Until they tackle the psychological part of this, we’re never going to see improvement.  For now we just keep throwing out an absurd amount of underwear (we should by stock in Hanes!) and trying any way we can think of to make them use the bathroom.  A couple of weeks ago we finally put Little Sister in underwear during the day.  She’s getting the peeing part down okay.  She has accidents about 15% of the time.  But, pooping is a whole other story!  I’d like to blame this on the Ehlers-Danlos and her hypotonia.  It makes sense that since she’s stretchy that something like this could happen.  But, Big Sister doesn’t exhibit any of the signs of Ehlers-Danlos and still has this problem, so there’s got to be something else going on.  I am going on a quest to find a doctor who can tackle this once and for all.

And as if this was stressful enough, I’ve had a difficult time handling Little Sister’s outbursts.  We’ve been at the beach all week, which is our typical week before school starts routine.  It’s our second long getaway of the summer (the first being Disney and you’ve likely already read how poorly that went.)  Going down the shore is usually low stress for her.  There are days when she flat out refuses to go to the beach, so I usually stay back at the house with her.  I love the beach, but if I don’t get down there every day, that’s fine with me.  However, I cannot handle being stuck in the house 24/7.  This week it’s been difficult to get her to leave the house at all.

Here’s the event that made me just lose it.  When we’re down here we almost always cook at home.  Saturday we decided to have lunch out.  Yeah!  I was going to get to try a new restaurant and I didn’t have to cook!  We found this nice looking Italian place in town.  We got seated and I picked out something that sounded yummy.  After ordering I noticed that Little Sister seemed to need to use the potty.  I made her come to the bathroom with me and once back there she started screaming and crying!  I’m sure everyone heard us.  Getting her to sit on the potty became a huge struggle.  I pulled her pant off and held her there, not sure why I was doing that because I knew it wasn’t going to work.  After about a minute I took her off and dressed her again and ended up in tears myself.  I just couldn’t take it anymore.  Potty training has been a disaster, her behavior has gotten pretty bad, we cannot even go out as a family anymore, and I’m not handling this well.  I ended up carrying her out of the bathroom and straight out of the restaurant, asking my husband and mom-in-law to box up my lunch and coffee.  My husband followed me out and helped me carry Little Sister out to the car, where she and I just sat in the car crying.  I’m at the end of my rope with her and not sure what to do next.

We’re meeting with her occupational therapist and physical therapist a week from today.  We’ve not had the chance to sit down with them yet and I’m hoping they have more insight on things than her case manager who meets with us to do her IEP.  Although her sensory issues are not a problem at school and have therefore been a struggle to get into her IEP, they are making life at home almost impossible.  There’s got to be something we can do.  I also ordered two books on sensory integration and they arrived just after we left for the beach.  I’m ready to seek family counseling at this point.  I’m tired of crying about this and feeling helpless.  It doesn’t help that we should be seeing her go off to her first day of kindergarten this week.  I know she’s not ready and I’m 100% certain that keeping her back a year was the right decision, but it’s still hard.

August 27, 2009

Another Sesame Place Day

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The Variety Club is sponsoring another day at Sesame Place for kids with special needs.  It will be held on Sunday, November 1st for The Count’s Halloween Extravaganza!  We’ve never been to this before and until today I had no idea that the Variety Club hosted this.  We usually steer clear of things like this because Little Sister is likely to be scared and overwhelmed, but knowing that the event is tailored for special needs kids makes me think there’s a chance of this working.  So, we just signed up. Hopefully this will go better than Disney!

If you or anyone you know has a special needs kid and are in the Philly area, check it out!  Sesame Place and Variety Club throw awesome events!  We take part in the Sesame Place Challenge each spring and are always so impressed.  It’s also great to be in the park where you know others around you are dealing with similar things and won’t give you strange looks like you may get elsewhere.

Registering is always kind of neat, too.  It’s the only thing I do where Ehlers-Danlos Syndrome is actually listed as a choice instead of using the “other” or write-in options!

August 18, 2009

Disney with Special Needs Kids, Part III

We divided up Epcot into two days.  The first one focused on all of the rides in the “Future” area and the second was primarily aimed at doing the “Worlds” side.

Day Five: Epcot

Waiting to get into the park was a challenge because she hated the music that was playing.  She was quite upset and demanded to go home.

Test Track – Yes, I took her on Test Track.  Correction, we all went on Test Track and she sat with my husband in the car behind me.  We said it would be like Mommy or Daddy driving really crazy.  She hated the dark part, but seemed to like the race track part outside where it was bright and sunny!  She refused to go on it again the next day when we came back, so I imagine she didn’t like it all that much.  3 stars.

Journey into the Imagination with Figment – She refused to go on the ride even though she loves the Figment character.  She did love the play area outside of the ride.  That was great!  Play area – 4 stars!

That’s all she was willing to do at Epcot.  She spent the rest of her time at the “car wash” and playing in the sidewalk fountains.  Apparently being in soaking wet clothing is a good thing!

Day Six: Epcot

She did okay at Epcot on the Worlds side.  Endurance was more of a problem here since there’s a lot of walking.  We did use a stroller to get around, but she got tired from the little bit of walking she did do.  She was pretty good during the excellent lunch we had at Great Brittan’s Rose & Crown Pub.  Then we got to find Mary Poppins at the toy store there.  She happily greeted her as Mary Poppins is one of her favorite movies (just like her mom!)  Usually Mary Poppins is outside, but it was pouring rain (quite fitting for England), so she was inside in a well lit part of the toy store.  We also did some shopping there.  They have a ton of the Little Miss and Little Mr. books.  Little Sister LOVES Little Miss Naughty (I hope it’s because she’s all purple and not because she’s naughty), so we got her a Little Miss Naughty doll, which she loves.  We tried to wait out the rain, but it wouldn’t stop.  We put on our ponchos, which thrilled her, and headed off to other destinations.

She generally waited outside while we looked around the shops in the other countries.  We got her into Mexico for a little bit.  It’s dark in there, but there are tons of beautiful, brightly colored objects there to look around at.  She also enjoyed banging on the drums there.  But, she demanded to leave after about 5 minutes.

She was thrilled about having afternoon snack at Norway’s bakery.  I got her a giant chocolate chip cookie.  It had a picture of a Viking on it on a circle of white chocolate.  I turned it over so she wouldn’t see it.  Thankfully she had already started eating it before noticing it and I explained what it was and to ignore it.  She didn’t seem bothered by it and inhaled the whole thing!

Day Seven: Sea World

Dolphin Show – She did kind of okay during the dolphin show.  She likes dolphins because the name of her previous preschool classroom was “dolphins.”  She got upset when the tone of the music changed when the mean guys came out as part of the bird portion of the show.  4 stars

Shamu – She was quite upset during this show, even though it’s an outdoor stadium in bright sunlight.  We sat in the top row of the stadium where it was a little cooler and far out of the “splash zone.”  This didn’t help her any because she spent the entire show complaining about being up high.  She kept asking to leave.  She held her ears and threw a fit most of the performance.  She spent the majority of time standing on her seat looking out the back of the stadium.  0 stars.

Penguin Exhibit – I thought she’d like seeing the penguins.  She enjoyed them when we went to Montreal two years ago and she still remembers the trip.  We got part way into the exhibit when she started to complain about the darkness.  I focused on how cute the penguins were and picked her up for a bit.  She stood on the moving sidewalks, thank goodness because although she’s barely 40 pounds, she’s hard to carry when throwing a fit. I got her over to the puffin area where she really got upset about the smell (it wasn’t pleasant).    I had to pick her up and carry her out as fast as I could, which is difficult to do when a lot of people are between you and the exit.  1 star.

Cirque du Soleil-type show – Everyone except my two girls really wanted to see this, which I found strange because we saw the real Cirque du Soleil when it was in town last year and they both liked it (goes to show how dramatically worse her sensory issues have gotten during the past year.)  Thankfully my husband’s cousins met up with us for the day and they happily took my girls over to the kids’ area so that we could see the show.

Shamu’s Happy Harbor – she had a blast here!  Yet another chance to get soaking wet while fully clothed! I think this was the most fun she had all week.  5+ stars!

Shark exhibit – I tried this with her, but it was another disaster.  Soon after we got inside I had to swoop her up and race for the exit.  She enjoyed looking at the rays in the outside tank though!  Inside – 0 stars; outside – 3 stars.

(Side note from me regarding MS and Disney/Orlando: Seaworld was far more difficult for me than the other days.  I’m not sure if it’s because it was our last destination and that I was tired or if it was because of the heat.  Seaworld definitely does not have the amount of shade that Disney locations have.  There are stretches of walkway that are in the blazing hot sun.  I was wiped out.)

Disney Trip in General:

We’re still having no luck with potty training.  It’s going very poorly.  She used the potty about 10% of the time during vacation, which is actually an improvement.  She would only use the potty when we were out and about, not at the rental house.  It was kind of like being at home.  She won’t use it here, but wants to check out bathrooms in other places.

Although we had her DAFOs on, she fell a lot.  I was concerned that she’d be covered in black and blue marks when we got her back to school, but it wasn’t too bad.  She fell at the Honey I Shrunk the Kids playground and on the wet floor in the Sea World café.  She also fell off her bed (while awake and just playing) at least 3 times.

I think her favorite part of the trip, aside from Dumbo and It’s a Small World, was the pool at the rental house.  The house had swimmies which made her feel safe and people took turns holding her.  She got cold easily, so she went back and forth between the pool and the hot tub.  While I love being in the water, this part was hard for me.  The pool was too cold, so I generally stayed in the hot tub, which eventually got too hot and aggravated my MS symptoms.  She and I both have a hard time regulating body temperatures.

She generally didn’t eat well the entire vacation.  The exception was a large chocolate chip cookie we got at the bakery in Epcot’s Norway, which she devoured! She was also quite quiet the whole trip. She finally started talking a lot the last day when she knew we were coming home!

Surprisingly she did really well with flying!  On the way there she had an aisle seat and was really excited to have the window for the way home.  Unlike Big Sister who demanded the window seat on the way there, but rarely ever looked out the window, Little Sister seemed to be fascinated and looked out often.  Unfortunately, she also flooded her pull-up on the flight back and had a noticeably soaked bottom when she stood up.  We made her carry her backpack to try to cover her backside, which is when she started to throw a fit.  By the time we got to baggage claim, she had the hugest tantrum I’d ever seen.  She was spitting, hitting, screaming, crying – you name it, she was doing it.  This lead to her being grounded for the first time.  We took away all screen time (e.g., TV, computer) for the rest of the day and until noon the following day, on the condition that she had to keep her pull-up dry all morning and start using the potty.  (Potty training is still a disaster, but that’s something for a different post.)

August 11, 2009

Disney with Special Needs Kids, Part II

Our daily plan was to arrive at the park at least 30 minutes early so that we could get through the most popular rides before the park became crowded.  Touring Disney in early August was a gamble, but by arriving early each day we made out very well.  Our first two days we had “Birthday Fastpasses” for 6 of the people in our family because we were fortunate enough to be there during my brother-in-law’s birthday and his son’s.  They got on far more rides without waits than they ever expected to.  My husband estimates that they saved over an hour and a half of waiting in line.  The rest of our trip we had to use regular Fastpasses and wait in line more, which the older kids were not used to.  It didn’t matter for Little Sister because she wasn’t doing any of these rides anyway.

Day Three: Animal Kingdom a.m., Downtown Disney p.m.

There’s not a lot of stuff for a sensory-challenged kid to do in Animal Kingdom….

Opening – Each park does its own special opening routine.  Animal Kingdom’s was cute (it had Mickey, Minnie, and other standard characters), but the music was overwhelming, so this brought on tears from Little Sister.

Kilimanjaro Safaris – We headed here first and got on almost right away.  It was one of the only rides the whole family did together.  Everyone loved this ride.  We saw so many animals!  It was great! 5 stars!

TriceraTop Spin – This is Dumbo, but with dinos instead of elephants.  She loved this, but there was no shade and It was really hot! 4 stars

Boneyard – This was a HUGE hit!!!  We had to ask for directions to find it, but as part of this section in Dinoland there’s a big sandbox where kids can uncover a huge fossil.  She had no interest in uncovering the fossil, but had an awesome time playing with the sand.  We had the whole place to ourselves for the first 30 min. we were there.  The cast member there was fantastic.  Little Sister was hesitant to get started in the sand, but the cast member went in the sandbox with us and started making castles and pizza with us.  I had a great time talking with her.  We spent well over an hour here. 5 stars!

Festival of the Lion King – Little Sister flat out refused to go to see this.  Screaming and crying began at the mention of the idea.  I really wanted to see this, so my husband took her to see characters nearby instead, which she loved.  After seeing Lion King, I know she would have hated it, so I’m glad she didn’t join me.

Character Greeting Area – 4 stars.

We didn’t have a stroller this day and she was very exhausted by mid-morning.  By the time we were ready to head out of the park, we ended up taking breaks at almost every set of benches on the way out.

Rainforest Café in Downtown Disney – After resting at the house that afternoon, we headed off to Downtown Disney to shop and have dinner.  We all had a great time shopping, but Rainforest Café was the biggest disaster yet!  I had a feeling it was going to be a challenge, but knew the older kids would love it so we took the risk.  Little Sister spent the entire time SCREAMING as loud as she could and crying.  She was a total mess.  Sadly, my husband and I just had to laugh.  What else could we do?  I was either going to be in tears with her or laugh.  I chose to laugh.  We even captured the meltdown on video.  Not sure I’m going to post it anywhere, but I’m pondering it.  My husband eventually took her out of the restaurant.  She refused to eat anything while we were there, so we took her dinner with her and she ate it around 8 p.m. when we got home.  I highly recommend never taking a sensory challenged kid to Rainforest Café!  Zero stars!!!

Day Four: Magic Kingdom

The second trip to Magic Kingdom went much better than our first.  By this time Little Sister knew what to expect and I was better able to predict her reactions.  We immediately split off from the rest of the family and headed to just the things she wanted to do.

Cinderella’s Carousel – She loved this!  She wasn’t as excited about this as she was about Dumbo, but she really enjoyed it.  I helped her onto the horse and then she didn’t want any other help.  She made me step away.  Her balance has improved a lot, as has her confidence. This gets 4 stars.

Dumbo – She cried at the start of this because the purple Dumbos were already taken and we had to ride in a red one.  This was upsetting, but she did calm down pretty quickly.

Tinker Bell’s store – We had to go back to get more pixies dust, of course!  This time we got even more dust and it’s still not out of her hair!  Mine finally washed out after a few shampooing.  She asked the cast member for the bell this time and was so excited to see Tinker Bell again!

Toontown – We met up with the family in Toontown, which wasn’t supposed to open until 10 a.m., but we got there closer to 9:45 and it was already open.  It was pretty empty.  I tried to get Little Sister to meet Tinker Bell (her second favorite after Cinderella), but she wanted no parts of it after seeing the location.  There’s a Hall of Fame where there are 2 lines to meet characters: one for the Princesses and one for the Fairies.  The entry is a well-lit store that is very inviting.  Then the trouble began.  The hallways back to the characters are dimly-lit, so the screaming and crying began and would not stop.  So, we left.  We went over to Minnie’s house.  We had the place almost to ourselves and she LOVED it there!  She had so much fun playing with everything in there, especially in the kitchen.  She couldn’t wait to give her sister and cousins a tour of the place when they arrived!

My husband took Little Sister to look around the store and other parts of Toontown while I waited in line with the other 3 kids to get the Princesses’ autographs.  At least they didn’t mind the atmosphere.  Of course the area where the characters are is bright and inviting!  I wish I could have slipped Little Sister in through the exit!  I even mentioned to a cast member in the store that she was afraid of the waiting area (this was when she was still crying), but they didn’t offer us another way in.  I read about a special pass they will give to people with special needs, like children with Autism, but since she’s not autistic and doesn’t have any visible disabilities (unless you look at her DAFOs), I didn’t think we could have gotten one of those cards. Also, I never in a million years expected her to have this many problems, so I didn’t think it was worth the hassle to try to get one.  Now I know better!  I think having that card may have helped.

Anyway, I had a great time seeing the Princesses with the other kids.  When we were done, all of the kids, even Little Sister, rode on the Barnstormer at Goofy’s Wiseacres Farm, a perfect first rollercoaster.  It was Big Sister’s first rollercoaster when she was 2 and she loved it, so we took our chances with Little Sister.  Turns out Little Sister liked the rollercoaster and asked to go right back on it.  This time I joined her!  I’ve not been on a rollercoaster since I was 21 (quite a while ago!)  It was fun!  I’m glad she did something adventurous.

Toontown Town Hall – 0 stars

Minnie’s House – 5 stars!

Barnstormer at Goofy’s Wiseacres Farm – 4 stars

It’s a Small World – On the way to It’s a Small World we finally got to see the White Rabbit.  We spotted him just before the downpour during our first stop here, but he had to run when the rain picked up.  We walked up and the cast member had just closed the line.  I explained that we had already seen Alice and just missed the White Rabbit when the rain started and thankfully she let us be the last in line.  Then we ran off to It’s a Small World and she enjoyed the ride again.

Dream Along with Mickey – This is the show that is staged in front of Cinderella’s Castle that runs throughout the day.  We missed the first few minutes, but we got to watch the princesses and princes dance, which she loved.  Then things took a turn for the dark when Captain Hook came out and then Maleficent from Sleeping Beauty.  At that point she demanded we leave, so off we went.  Only 2 stars!

Tom Sawyer Island – Next we met up with the family again and headed over to Tom Sawyer’s Island.  By now it was getting hot and everyone was tired, but we thought the kids would have fun.  I was getting tired and it was way past lunch time, but I plugged along.  The kids had fun exploring the island and Little Sister did fairly well.  Her endurance was beginning to wane at this point, so we cut the touring short and departed for home.

The Railroad – We took the railroad back to the front of the park.  Little Sister thought riding the railroad was really cool!  She loved the train ride.  4 stars!

Oh, I forgot to mention in the previous post that she went on the Tomorrowland Indie Speedway.  She road with her aunt, who operated the “gas” peddle, but Little Sister “drove” the car and had a great time!  She was annoyed by the loud noises, but it was bright and sunny, so I guess she was willing to overlook the noise level to have the opportunity to do something “grown-up,” like driving a car. (I had a car to myself, which wasn’t easy.  I had to drive left footed and that was surprisingly really difficult for me!)  4 stars!

I was starting to get tired, but was still hanging in there!  The afternoon breaks really helped.

August 10, 2009

Disney with Special Needs Kids, Part I

For the past year we’ve been planning a family vacation to Disney.  My mom-in-law turned 60 this past March, but didn’t want a party.  Instead she wanted to do a trip where she could spend time with her kids and grandkids.  Given the kids are 5, 7, 8 and 8, where better to go than the “happiest place on Earth”?  Since she’s a teacher, we had to wait until this summer for the big trip.  We finally got to celebrate this past week.

We rented a house near Orlando that could fit us all.  It was much better than having several hotel rooms.  It gave us adults a place to hang out once the kids were finally asleep and we had our own pool and hot tub to enjoy.  It was great to hang out with my husband’s brother and his family.  We don’t get to see them enough since they live clear across the country.

The girls were both great on the flight down.  They were both a bit nervous.  This was Big Sister’s 5th plane trip, although she only remembers one of them and she got sick just after that flight.  This was a 1st for Little Sister.  She actually did really well on the plane.  I was surprised.

I expected that her gross motor delay would cause some challenges while touring Disney, but we avoided the stroller on the first day just to see how she’d do.   I figured I could always rent one midday if needed.  She wore her DAFOs everywhere we went.  She got tired, but we made it through the day without a stroller.  She got pretty tired though, so we used a stroller with the exception of one other day when there was not a lot of walking.

Turns out that our biggest challenge was her sensory issues.  I was not at all prepared for that.  I had a feeling that Disney would be difficult for kids with sensory challenges, but it wasn’t until we were there that I realized just how bad Little Sister’s sensory issues were.  She had almost constant meltdowns and tantrums.   There was more screaming and crying than should be allowed in the “happiest place on Earth.”  Here’s a blow-by-blow account of how she handled (or didn’t handle!) things in Disney.  I hope it gives other parents of kids with developmental delays some idea of what we experienced.  I certainly wish we had noise canceling headphones with us, but beyond that I have no suggestions on how to handle any of this.  I wrote a long letter to her occupational therapist and hope to get some suggestions and assistance once their summer break is over.

Day One: Magic Kingdom

Monorail – a huge hit!  5 stars!

Dumbo – this is the ride she was really looking forward to.  There’s a knock-off version that she rides at the boardwalk amusement park we go to frequently, so she was really used to the idea of flying elephants.  This was by far her favorite ride!  5+ stars!

Tea Party (spinning tea cups) – She had some reservations about this one, but there was nothing dark and no loud noises, so she gave it a try.  This is my favorite ride, so my excitement helped win her over.  This was a 3 star ride for her.

Many Adventures of Winnie-the-Pooh – How scary can a honey-loving bear be?  Pretty terrifying if you are a 5 year old with sensory issues!  She HATED this.  It was too dark.  The doors separating the various parts of the ride freaked her out because she couldn’t see what was coming next.  Oh, and you feel bursts of wind (something she can’t stand on a normal, mild breezy day anyway.)  No stars!

Mickey’s PhilharMagic – Okay, I guess we pressed our luck with this one.  She cried even before it started and begged to go home.  She wouldn’t even try on the 3-D glasses.  She smiled once when she saw Ariel, but the rest was a nightmare. 1 star, only because we got one smile out of her.

Tinker Bell’s store (by the castle) – A HUGE HIT!!!  She got sprinkled with fairy dust (as did I) and got to ring a bell to have Tinker Bell appear in the store.  She thought that was awesome.  (NOTE: Pixie dust was still in her hair several days later, despite baths and time in the pool.) 5 stars!

Cinderella’s Royal Table – Near disaster!!!  A special lunch with Cinderella, her favorite, was a belated birthday present.  We’ve planned this for months.  Getting into it was like trying to get highly sought-after concert tickets.  We’ve talked about this constantly.  It was her special time with me, Grandma, and her aunt.  The other kids were off doing rides she didn’t care about with the dads.  So, we arrive early to put on the Cinderella costume I brought with us.  We enter the castle to use the bathroom and she starts to FREAK!  She screamed, cried, and refused to go into the bathroom to get her pull-up changed and certainly wasn’t putting on her costume!  She demanded to leave. She cried and screamed for 45 minutes while everyone around us was enjoying themselves.  I even took her outside to see that it was the Cinderella castle, the one we see in books and on TV.  That didn’t help.  It was not bright, but I didn’t think it was scary in any way.  Here’s a photo from the area we were in:

Apparently the "scariest place on Earth"

Apparently the "scariest place on Earth"

They called our seating time and it was time to meet Cinderella before heading upstairs for lunch.  She still wouldn’t calm down.  I carried her into line anyway, with her autograph pillowcase in hand (we did that instead of books so the kids would have something neat for their rooms after the vacation.)  The “cast members” were really nice and understanding.  I got Cinderella’s autograph, but Little Sister wanted nothing to do with her.  They told us we could try again after lunch and that we wouldn’t have to wait in line again.  So, I gave Little Sister the choice of the stairs or the elevator and she picked the elevator and off we went.  Thankfully it was brighter upstairs.  She finally stopped screaming and making demands, but was still sobbing.  We ordered food and got something to drink and soon the princesses were entering the room.  Snow White was the first to arrive at our table.  Little Sister got in a picture with her without crying and got her autograph.  Sleeping Beauty, Belle, and Jasmine followed and she smiled in pictures with each of them.  She was happy to see them.  She didn’t eat much of anything, but at least she calmed down enough for the rest of us to enjoy a delicious meal!  When it was time to leave we tried pictures again, but she still wanted nothing to do with Cinderella on the first floor of that castle.  We did get a picture (it was part of the package, so it was already paid for).  She got close to her, but wouldn’t hug her.  This is her favorite princess by far, so this made me pretty sad.

Small World – We caught up with the rest of our family and it was starting to rain.  We had to wait about 30 min. for them to print the pictures, so we all went over to It’s a Small World.  Thankfully there was a brightly lit and since the rain clouds were rolling in, the sun wasn’t as bright so the contrast between being outside and stepping into a ride area wasn’t as great.  She loved this ride!  It got 5 stars!

I think the best part of her day was getting caught in a torrential downpour after picking up the pictures.  We didn’t have ponchos (but we certainly bought them that evening!), so we got soaked to the bone getting to the car.  She LOVED getting drenched in her clothing and thought it was the best thing ever!  Me, I hate getting wet (we joke that “Mommy melts” in the rain,) so that part was not fun for me.  I’m glad she enjoyed something.

Day Two: Disney Studios (a.m.) and Epcot for the nighttime show

I must say that there is almost NOTHING in Disney Studios for kids with sensory issues here.  This park was one disaster after the next.

Voyage of the Little Mermaid – STEER CLEAR OF THIS ONE!!!  This was a horrible experience.  She screamed and cried from the moment we entered the theater.  It was dark, there were two times when there was a lot of wind, water squirted, Ursula was much scarier than expected….  It was just terrible!  No stars!

Playhouse Disney Live – She was hesitant about seeing another show after the last couple of experiences, but we convinced her to try.  She loved it.  It was the only good thing here.  She even got up and danced!  She was so happy! She doesn’t even watch Playhouse Disney at home anymore since she decided she was too old for it, but she really liked this show.  5+ stars!

Honey I Shrunk the Kids Movie Set – We gave up on trying anything else and went straight for this playground.  She had a blast!  We were able to find plenty that she could do.  She was pretty proud of what she was able to do and that she was able to keep up with her sister and cousins for the most part.  They loved getting soaked with the super soaker!  We discovered that she’s pretty darn happy when she’s wet (as long as it’s not in the bathtub!)

Muppets 3-D – Okay, she wouldn’t come with me to this one, but I had a good time there!  She probably would have hated Animal anyway.

Each afternoon we headed back to the house we rented for a break.  We’d swim, nap, or take showers/baths.  Having a quiet place to retreat too was awesome.  Today was a nap day!

Epcot for Illuminations – This was by far the coolest evening show I’ve ever seen, but it was not without screaming and crying from Little Sister.  Leading up to the show they play music from a variety of cultures.  She freaked out when they played Asian music.  She screamed, cried, held her ears, and tried to hide in the stroller!  Thankfully she did okay during the show and thought it was pretty cool, except when the music got “annoying.”  She had just seen fireworks last month, so she knew what to expect from the sound of fireworks which I think helped with the experience.  3 stars.

I wish I had brought noise-canceling headphones with me.  I’m not sure if she would have worn them, but it seems like it would have helped ease her reaction to sounds, music, and other noise.

This brings us through Day 2.  I was still holding up just fine, despite the heat.  I was pretty proud of myself.  I’ll write more about our experiences soon.

July 29, 2009

Making Promises

My girls were schedule to have their first swim lesson yesterday afternoon.  Neither knows how to swim and both are terrified about the idea.  Little Sister had some exposure to pools when she received water therapy.  Her occupational therapist was awesome and actually got her to go under water a few times.  But, the relationship between the hospital and the pool wasn’t going well.  We’d show up and the facility wouldn’t have the appropriate chemical levels in the pool or something else would go wrong and we’d have to leave.  Do you know how hard that is on a little kid who got psyched up to do something and thought she’d have fun, only to see the pool and be told you can’t go in?  Or how hard this is for the mother who got her daughter all ready to go, including picking her up early from school and driving 30 min. to get there?  After this happened a few times, we ended up on land for the rest of those O/T sessions.  Taking a gamble on the pool just wasn’t worth the potential disappointment.

It’s been about 18 months since Little Sister had a chance to do much in a pool.  We’ve been to a couple of pool parties, but it’s hard to find a pool warm enough for her to go into.  She turns blue very quickly.  A few months ago her school had a pool party at a warm water pool that is on the location of her day care site.  My husband and I got to chatting with the lifeguard who mentioned they did swim lessons.  It’s a senior citizens’ therapy pool, so they keep it warm enough for her.   Heck, I’d love to use it!  The water is kept around 90 and the air temperature was in the high 80’s.  I know warmth and MS are not a good mix, but also having EDS throws a wrench in what makes a perfect temperature.  The pool I used to exercise in was kept too cold for my comfort.  I’d also be blue after a while and my toes would cramp up so badly I’d have to call it quits.  But, back to the point…

I called the pool just after the party, but the two instructors were not available and I was told to try back in a couple of months.  So, I called again a couple of months ago and didn’t hear back.  I’m sure the voice mail wasn’t received.  I called back just recently and got the names of the two instructors.  I called the first and she was able to do four semi-private lessons with us. She could even do one before we left for Disney (where we’d have a pool at the rental house for a week for them to practice and get more comfortable.)  AWESOME!

Yesterday Big Sister comes home from camp and we rush to get her ready for her lesson and head out to get Little Sister.  Big Sister was so incredibly excited.  She even made a picture for the teacher instead of doing free swim at camp that afternoon.  She also admitted to ducking swim lessons at camp in favor of a different sport instead.  But, she was excited to learn how to swim and even promised to try to go under water (the theme of her picture).  We hurry over to daycare and rush Little Sister out the door.

We drive around to the other side of the building, not wanting to have to walk through it all wet on the return.  We go in and pay for the lessons and head off to the locker room to change Little Sister.  I think I got a funny look or two from the older ladies who realized I was still changing diapers on someone her age, but I just smiled and kept moving along.

Then we had out to the pool.  A couple of women were doing laps, but no sign of the teacher.  A gentleman was cleaning the deck, so I asked him if he know anything.  He was very nice and made a call, but didn’t have any indication that the woman was coming.  I had already left her a voicemail message from my cell, but she didn’t call back.

So, after waiting for 15 minutes, we gathered our things and the girls began to cry their little eyes out.  I felt so bad, but I was also really, really angry.  People really shouldn’t make promises to kids and then not follow through.  The girls cried the whole way home.  I had them keep their suits on, so they hopped into our oversized tub when they got home, but that wasn’t the same.  We felt so bad that we even got them McDonald’s for dinner.

I sure hope the girls are willing to give this another try soon.  I’m not giving up until they are comfortable around water.  I love to swim, although I rarely get to do so.  I can’t wait to have access to a pool for a week.  I hope to be able to teach them a little bit this week and hope that their cousins, who love to swim, will rub off on them and teach them a trick or two.

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