We made it to Disney!

After two years of discussion and trepidation, we booked our trip to Disney in December.  It is the first trip to Disney for the whole family and our first official family vacation ever!!!

We had to be at the airport two hours early and for a flight that leaves at 8:25, that is EARLY.   It is made easier that the girls are normally early risers, but 5:00 am was a bit much even for them.....

We flew JetBlue direct to Disney and were in row 6.  JetBlue books last to front which is nice because we were not waiting inside the plane the whole time.

Take off went great.  Amanda did fabulous.  She watched Backyardians and Diego on the tv on the back of the seat in front of her.  She did not want to hear them with headphones.  She had her blankie on the plane and I was glad that I did not pack it.

She did fabulous with the landing.

Waiting to find the bus to Disney was a little much for a little girl who at this point had refused to drink anything.  Got on the bus and she sat with Craig for the ride.  LOTS of thumb-sucking.

Got to the hotel and our room was ready!  On-line check-in is the way to GO!!!  Rained on us during the walk to the hotel room but no biggie.  Our bags would take longer to get to us.  So we went and had lunch.  Managed to find a cheese pizza and pink milk.  Amanda would only drink less than half the milk.

Took the ride to Downtown Disney and took in the sights!  Tessa and I had fun in the LEGO store but did not see anything we could not get at home.  But at this point, Amanda was COOKED.  She was tired.  THIRSTY.  And hot.

Had to wait 20 minutes for the bus and the entire time, she fussed, sucked her thumb and went between Craig and I to hold her.  Got back to the hotel and forced her to drink a bit more juice.  Finally got about 4oz in her. 

Then we took her to the pool where we discovered that all the work Craig and I had down at the beach and water park had still held.  She walked down the steps up to her neck in the water and had a blast.  Walked a little too far in and Tessa had to haul her back.  But she was still determined to head back.

Had dinner.  Instead of bread, we were given cornbread and Amanda tried a bite but made a face.  But a few minutes later asked for some and then she ate two pieces of cornbread, then half her pizza and fries.  Still not happy about her small liquid intake and will have to force liquids tomorrow at Magic Kingdom.  I am not willing to try our Mickey Mouse's EMTs if she dehydrates.

8:00pm came early and my little creatures of habit put on their PJS and got into bed.  No fireworks or late nights for these little girls.

Amanda is still tossing because we have the light on but Tessa is OUT!

Tomorrow we shall play by ear.  Not sure Amanda can handle the overload and physical stress of a full park day.  There is no way she can make it until close.   I just hope we make it past lunch.  But going into this, I knew our experience with Disney was not going to be the typical family experience.   Nothing in a family with a child with a disability is typical.  All I can hope to do is provide enough of an experience that she feels safe and excited in with hampering Tessa's.  It will not be perfect.  We will not even see half a park.  We will be lucky if we see an eighth.  But if she is happy, then it works for us. 

Beauty is in the eye of the beholder...

The downside of being able to sew, crochet, knit or quilt is that your children want you to create gifts for their teachers.  I cannot just pop off to Dunkin Donuts and get them gift certificates.  No,  I have to work my hands and back to the bone.  But I guess since these folks spend more time with my daughters than I get to, they deserve it!

So my daughters decide that I have to make their teachers a quilt.  Oh DEAR!!!!!  I compromised with them by saying I would make a baby-sized quilt as a wall hanging.  Cause the last day of school is June 18th!!!  Luckily, they agreed.

I emailed the teachers to play off each other asking what they liked.  Did they like cats, dogs, coffee, beaches, gardening.....anything that I could use as a theme or color pattern for the quilts.  I got answers back and scoured the Internet looking for fat quarters that matched the themes.

Both teachers like coffee.  Go figure.  It is Rhode Island and we have a Dunkin Donuts on every corner.  We created coffee syrup flavoring.  We eat coffee ice cream.  But finding coffee fat quarters was driving me batty.  There is an AWESOME fabric collection coming out in August.  But that does me jack-diddly right now.

So last night, we jumped over to Joann's to see what fat quarter bundles they had.  Not much.  Sigh. 

But Amanda grabbed a bundle of fat quarters and INSISTED that Mrs Elizabeth, her one-to-one aide, NEEDED this fabric.  It was bright.  It was metallic birds in jewel colors.  I needed 6 and it only had 5, so Amanda picked a random yellow to go with it.  I wheedled.  I showed other suggestions.  One other pretty one she said would be for Mrs Murphy, but Mrs Elizabeth NEEDED this.  So it came home with us.

Amanda has Autism.  She gets fixated on certain things.  One of the things she is insistent on is STYLE.  She has a very defined sense of style for a 6 yr old. Mrs Elizabeth has helped make the last half of Amanda's school year so successful.  We were so worried that she would not be able to make the year in an integrated setting and Mrs Elizabeth certainly helped make it happen.  Without the support and effort of Mrs Murphy and Mrs Elizabeth,  Amanda would have had a much worse year.  And we want to show our gratitude.

I posted on Facebook asking for opinions:

What do you do when the fabric and colors that your daughter picked for her teacher's gift are hideous? Amanda picked this for her Aide. The fabric bundle is birds and I needed one more so she picked this yellow. It is a wall quilt. Do you get it? Or tell her it was not right?

People basically said to go with what Amanda wanted.  So I sat down and started cutting, sewing, ironing and cutting again last night.  And by 11pm, I had all 20 squares assembled.  Took a picture, posted the update to Facebook and took my tired and achy self to bed.

WOW!  Bright!!!

 I showed little Ms Priss my hard work this morning and she wanted to bring it to school.  Sorry kiddo, mommy still has to sew all the squares together, sew the rows, add borders and backing and hand tie this bad boy!

So after the girls got on the bus, I sewed the squares into rows and sewed the rows together.

In all its glory

Put on your sunglasses!

So the little diva was correct.  It does look good together.  I just hope Mrs Elizabeth realizes that Amanda loved her so much that she had to have this fabric for her.

Would your child's teacher or aide have appreciated this?  Would you?

Tandem Bike Riding Continued......

So, Memorial Day weekend was another couple of successful bike rides!!!

Saturday, we rode around the neighborhood before lunch.  It was so warm.  Amanda had a blast.  She did lots of pedaling with Daddy.

Monday, we went to the Blackstone River Bike Path.  We rode 5 miles.  2.5 each way.  Amanda was nervous at first because she did not recognize the area.  But soon as we pedaled over the river and along the waterway, I could hear "WHEEEEE" and "Daddy, go FASTER!!!!!"

She was so happy.  It was great.  This was what we wanted to do as a family.  Amanda's autism and sensory delays threatened to not allow us to do this.  But the WeeRide Pro-Pilot allowed us to be able to do this.

So if you have a child with Autism or any other disability that interfers with them being able to ride a bike with you, please consider this.  It has added to our family.  Amanda is enjoying bike riding.  Looks forward to getting on the bike.  And wants to go faster!!!!!

I have already ordered the secondary hitch for my bike to make for easy changes and a new seat post that I can attach it to easily without crushing the suspension.  Hopefully, she will adjust  to me on the front!!!

On a bicycle now built for two....

Saturday morning, Amanda's tandem bike attachment arrived!!!  She was very excited and ran out to see the Fedex man.

That afternoon, Daddy put the bike together.

Watching Daddy read the instructions

And they were off for a brief test ride.  She was very nervous.

She did not pedal at all.  Just hung on for dear life!  But they went around the block.

Not so keen on the hill and turn.

But it was a successful test. 

And Sunday, late morning, we arrived at Rocky Point Walking Path.



Getting set to go.....

 And then they were off.  She yelled at him all the way down to stop.  He would stop and allow her to settle and then start off again....This repeated a few times until he just kept going.

She hung on tightly, very nervous until they went around one corner and I heard "WHEEEEEEEEE" from an excited little girl.

Tessa and I followed until we caught up with them.  Rode until the end and turned around.

Her bike gathered lots of attention from walkers and fellow bike riders.

Stopping to show off the bike

Starting back again

On the ride back, I rode behind them and coaxed Amanda to start pedaling.  She needed to be reminded to switch legs.  First she was just moving her legs forward and back.  So I rode behind yelling "LEFT! RIGHT! LEFT! RIGHT!!" until she remembered what to do.  Then I just told her what a great job she was doing.

Craig offered to stop and let her play at the beach and she did not want to stop.  So we raced up the hill to the start.

All in all, it was a great first bike ride as a family.  She knew she was safe.  Hills are still not her favorite.  We have to get another hitch attachment for my bike and remove the basket holder so it can fit.  But for now, she is comfortable behind Daddy.  Amanda will be able to learn to deal with the sensory input of riding a bike and learn to control her balance.

So, for your littles, who for whatever reason, cannot ride unassisted, this is a great alternative.  You know they will be safe and able to keep up with the family. 

Bike riding with Autism

Tessa learned to ride her bike without training wheels last fall.  She has been wanting to go bike riding with both Craig and I for ages.  Now that the warm weather has come and both Mommy and Daddy have new bikes, the poor girl is so excited to go.

Amanda, on the other hand, cannot ride a bike unassisted.  Even with training wheels.  She is distracted by the world.  The multiple sensory inputs of the wind in her face, sun in her eyes, having to pedal the bike, steer the bike all while trying to pay attention to where she is going and the world around her.

We toyed with a few ideas.  One was a tricycle but finding a tricycle in her size is difficult without spending a great deal of money.  The adaptive tricycles are extremely cost-prohibitive.

I scoured Amazon.com and came across this:

Bike USA Junior Stabilizer Wheel Kit

Those wheels attach to a 20'' BMX Bike Frame.  I started doing research on the type of bike.  Went to lots of bike stores looking at bikes to see which ones could have this attached and still be a pretty princess bike for our Ms Panda.  Asked many associates on their thoughts.  Showed it to Amanda to get her opinion.  I thought it was a great option.

Last Saturday, we took turns trying Amanda on Tessa's old bike with the regular training wheels.  She was so anxious and scared.  We both were cramped and sore from holding onto the bike, hunched over.  Reminding her to pedal.  Trying to get her to steer.  Watching her as she watched her shadow on the ground.  I realized that this was going to be too much for her right now.

But we are not ready to leave her behind.  And her sister needs to bike with both parents too.  And she is too big to ride in those trailer attachments or seats.

So back to research mode.  And I found this:


Tandem Bike Attachment

 The attachment will fit both Craig's mountain bike and my hybrid.  She has the option of either pedalling or not.   She just needs to sit and hold on.  This way, she can join us biking and slowly gain her confidence and learn to deal with all the sensory inputs of bike riding.

I bought it last night and paid 9.00 to have it shipped for Saturday delivery.  Will post pictures and let you know how it worked out.

Placement meetings and IEPs

Nothing makes a parent of a special needs child panic and sweat like getting home the annual meeting notices.  It is May and for us, it is THAT time of year again.

So at the beginning of May, I got home the notice for Amanda's placement meeting where I would meet with a room full of professionals, all of whom had already decided Amanda's placement for next year should be.  All this prior to writing her IEP.  Amanda's IEP expires at the end of June, technically.  And placement for 2nd grade needed to be made.

Oh God....oh God.....the nerves.  This year has been so difficult for her.  And the last few weeks, she has had to be removed from the classroom for tantrums.  Even with a one-to-one aide, she has struggled.

Where would they ship my baby off to?  She was so excited to be able to attend the same school as her sister this year.  She had to attend a different school for Kindergarten.  She would be heartbroken to have to move.  But honestly, if the school did recommend it, I would have to go with it.  This school has been incredible in trying to understand Amanda and teach her. 

What if they recommended retention?  Would I be able to hold back Amanda?  Her handwriting is difficult.  The thought of her handling the Math Minute quizzes and other things Tessa has done this year is something I could not even imagine her doing.  The anxiety of doing as many math problems as possible in a minute would put her over the edge.  But she is smart.  She knows her stuff.  But again, if the school recommended it, I would go with their recommendations.

So this morning, I head off to the school after a not so lovely night of sleeping....Wait in the office with butterflies doing mach 1 flight testing in my stomach.  I head down with Mrs M, Amanda's teacher, to a room filled with people.  There is the school psychologist, Speech therapist, school Social worker, school's special educator, the principal and Mrs M.

So Mrs M started talking about Amanda's year and how even with everything that they have done, with in itself is impressive, Amanda still requires more support.  That she has made great improvement and belongs in 2nd grade and that she feels that she does belong in a regular classroom, she just needs that much more support.

Drum roll please.....Here is comes.....

Ms D, the principal, says that she has created a classroom that is a partial self-contained.  It will have a special education teacher and an aide.  It is like a home room set-up.  That the goal is to have Amanda in the regular classroom as much as possible.  But this room would be there if she needed pullouts to help with academics or breaks, rather than a desk in the hall for one-to-one work if the aide was at lunch.  A safe room when she cannot control herself or needs self-regulating time with a weighted blanket or beanbag chair.  A place to present new materials and give her time to learn it such as with the Math Minutes etc.  This way, she will maintain the relationships that she has built in the school and still be safe and meet her educational needs.

I started to tear up.  I cried in the meeting.  Here is a school doing everything in its power to keep my baby there.  Most schools would have welcomed the opportunity to say "She needs these accommodations and it is available at THIS district school."  Not this school.  The principal went toe to toe and pushed for this classroom so that the students who needed more support did not have to be placed elsewhere.  A school that in only its second year of inclusion is doing EVERY in their power to keep THEIR students there.  This is a principal who cares deeply about her students.

I remember when I wanted Amanda to attend Kindergarten there.  This team strongly suggested where she ended up.  Ms D walked me to the office and I will never forget these words, "No matter what Kindergarten she attends, she comes back here.  She is OUR student."  Imagine what those words mean to a parent?  Someone WANTS your child.  Not something we experience often.

So Amanda will be placed in a classroom created for her and a handful of other students that this school wants to keep there but need more support.  Right now, there are about three 2nd graders, one 1st grader and one third grader.  No one older than 3rd grade.   Mrs M said that the group of 1st graders that Amanda and the other two have been with have been compassionate and learning themselves.  They also do not want the typical children to lose that by taking those who need more support away.

I was blown away today by my daughter's school, teachers and principal.  I walked away wanting to have flowers delivered to the school.

Not every day will be easy.  But today was a good day and I walked outside and set those butterflies free to fly where ever their hearts desired.............

A weighty subject

Amanda has been seeking deep pressure more in last year or so.  She always rested her chest on her computer desk enough that she has a rough spot on her skin.  At one point, I was afraid that she had displaced a rib because I could not feel it.  Seems she has a floating rib there.  She was wearing a weighted vest at school to help her with her need for deep pressure.  Her school therapists were seeing her put pressure on her face at times.

Lately she has been using a weighted blanket at school when stressed.  She actually curls up in a bean bag chair and pulls the blanket over her, seeking to be surrounded by the pressure.  Her one-to-one aide, Ms Elizabeth was nervous because Amanda is tiny.  She was worried about suffication.

So about a month ago I made her a weighted lap pad for classroom work.  I made both sides out of cotton fabric and added ribbons to the sides for sensory play.  My first attempt was rough.  The number of poly pellets were not equal.  The squares were not equal either.  The ribbons did not match exactly in the middle of the squares as intended.   But as a rough draft, I was pleased.  So I brought it to school the next day with Tessa and Amanda to give it to Ms Elizabeth. 

First attempt

To my surprise, it came home with her that night.  I was concerned that perhaps either the OT at school did not appreciate it or if Amanda had been too distracted with it.  Amanda had told me that she had cuddled with it at school, so distraction was a concern.  I took her to school the next day with it to make sure.  Ms Elizabeth told me that Amanda had loved it so much that she did not want to leave it at school.  She had tried to find a special place for Amanda to leave it but Amanda was resistant.  Ms Elizabeth sent it home rather than having something postive turn into a negative.  Good call.  So it went back and forth while I planned another one.

In the time period of planning, a friend of ours whose daughter has sensory issues, asked if I would make one for Abby.  Abby is a dear friend of Amanda's.  Of course.  My first sale!

So I came across an idea to use a piece of muslin fabric to plot out the grid for the squares and borders using a fabric marker.  With the quilting rotary pad in the picture above and a quilting ruler, it was a BREEZE to plot the grids.  Off I went with my small balancing scale and weighed poly pellets, sewed rows, cut ribbons and then added a pretty pink minkee fabric to the back rather than cotton. 



Pretty minkee.  Oh so soft and pleasing to sensory seekers.

The difference between my first and my second/third(Abby's and Amanda's are identical) is amazing.  The inner muslin liner made a huge difference.  My rows were even.  The placement of the ribbons were perfect!

Perfection!



So I kept home my first attempt and sent in my second lap pad.  Both Abby and Amanda love their princess lap pads.  Abby said that "it makes me feel much calmer" and she sat in her chair at school without a problem!  And both girls are pretty princesses so the fabric was a hit!

Now, onto my next project!  Because anyone who knows me knows that I am never at rest but go from one project to another.....I have many UFOs(Un-Finished Objects).  A weighted blanket for Amanda's bed!!!!

Amanda has many sleep issues.  Sleep and her are not friends.  Heck, they are mortal enemies.  Amanda has frequent nightmares and often has anxiety about going to sleep. 

Cannot imagine why............................






Off to the fabric store we go!!!!  Also picked up a digital scale to weigh the pellets.  Much easier to do the required grams per square!!!

Now of course, the muslin is much bigger than the quilting pad so there is some mental planning required to plot out the grid.  So I did it in halfs.  So the grid was plotted on Sunday afternoon and sewn to the cotton fabric on Sunday evening. 

Yesterday was the measuring and sewing!  Measure 6 dixie cups of 55 grams of pellets.  Pour into the 6 channels.  Sew across the row to encase the pellets.  Rise, lather and repeat for all 11 rows.  Amanda helped stack the cups and pour into the channels.  She kept the whip cracking on my back asking when I was going to be finished.

Muslin lining with all 66 squares stuffed and sewn

Close up of the squares.  You can see the lines for the seam allowances.

Finally, a picture from the front:


 It is HEAVY.  It is only 8 lbs but feels like so much more.  I have to add the flannel backing tonight.  So Amanda should have this for tomorrow.  Although after her NOT sleeping last night,  I may be working OT after dinner to get it done for tonight.  Wednesdays are also a highly anxious day for Amanda for some reason that we have yet to pinpoint. 

So I am planning on having lap pads, small blankets and twin-sized weighted blankets added to my Etsy site soon and will be taking orders.  I would love to make these for other children in fabrics that they love.  Little boys with trains, planes, pirate, and adventure hero fabric!  Dancers, butterflies, princesses, and fairies galore for the little princesses out there.  So if you know of any one in need, send them to me!

FA!!!!

Amongst my autism mommies, we have a saying, "FA".  Really, it more than a saying. It is a battle-cry to war, a scream of pain sent to God or a sad lamentation of pain. 

See, FA stands for F-Autism.  And substitute that F for the real word.  And there you arrive at the heart of FA.

And today, it is all of the above for me.  Today, we reached the day when Amanda's developmental pediatrician looked at me and gently said, "We have now reached the point where we need to discuss medication...."

Amanda has seen this doctor since he diagnosed her with Autism at 29 months old.  And at each appointment, it was always "Keep doing what you are doing....".  Now, what we are doing is not enough.  Granted, he said that if we had not been doing everything we had been, she would have arrived at this point earlier than today.  That we still need to continue doing it with the medication but she needs help.

Basically, her anxiety and her attention issues have gone beyond her control.  She is ending up being removed from class and it effecting her grades in school.  Her anxiety is causing her to not sleep.  She has nightmares all the time and gets up at 2:30-3:30.  Sometimes she comes into our room, other times she goes downstairs by herself.

I do feel quite a bit of guilt here.  I have both anxiety issues and ADHD.  And it seems that I have passed both of these curses onto both of my girls....... I know that anxiety and ADHD are the jelly to the peanut butter sandwich that is Autism, but I predisposed her to this in the first place.

So now we are starting her on an anti-anxiety medication.  I was given the choice between that or ADHD medication.  My fear with the ADHD medication is that they are stimulants and will cause appetite suppression.  Amanda cannot stand to lose any weight.  She will be 7 in July and only weighs about 40lbs.  The other is that they can also cause anxiety.  So my thought is to treat the anxiety first.   He agreed.  Once she is up to a good dose with the anti-anxiety meds, then we will have to start the ADHD.

And now I start the harrowing road of treating my child who cannot tell me of any side effects with medications that cause LOTS of side effects.  And trying to find the best balance of these medications.  All while watching her like a hawk for side effects.

So please join me in screaming "FFFFFFFFFFFFFFFFFFFAAAAAAAAAAAAAAAAAAAAA"



Amanda sitting on a pony for the first time ever at the Imagine Walk for Autism Project of RI



It is a new year!

Ok.  First post of 2011. 

We told Panda yesterday that it was a new year and that she would have to not come into Mommy and Daddy's bed at night.   She has been suffering such bad nightmares lately. Anxiety caused by the Autism.  So Daddy gave her his magic words to scare away the nightmares and I gave her Pixie Dust to ward off the nightmares.  Then we tucked her into bed and went downstairs to play DDO.

We logged off DDO around 9 and sat and watched a movie.  Just before midnight, we heard the upstairs door open and close.  I went running up the stairs to hear her whining in the dark.  We were not in our bedroom.  It was early for a nightmare, then it hit me.  OOOPS Bad parenting moment.  We had forgotten to give her "nightmare" medicine which is a small dose of valium to help with anxiety over the nightmares.  So she settled into Craig's side of the bed.  Downstairs I went to give Craig a midnight kiss. 

We put Amanda back in her bed and Craig cuddled with her until she fell asleep.

There is our New Year's Eve revelry.  Envious much?

Another day....

Wow, another blog post. On a roll now :)

Dropped the girls off at daycare today. They were so excited to go. Sad when your children are more excited about going to daycare for the day than staying home with you. I guess that it ultimately means that I picked a good daycare for them. They have fun, feel safe and cared for there. Can any working parent ask for more?

They are very tolerant of Panda and her ASD behaviors. They usually can redirect her. We only get called if she cannot be redirected and her meltdown lasts too long. They love her and take care of her. It is nothing to find her cuddling with one of the "grandmas" when you pick her up at night. Poor Craig usually gets yelled at by Tess that he is too early to pick her up and that she wanted to stay later.

I watched a video yesterday on youtube called Glass Children. Very sad story of how siblings of special needs children can feel looked through as the parent only sees the special needs of the other child. Very compelling story for me because not only do I have a special needs child with Autism but have lost a child at birth and will always miss that baby boy. Does Tess feel like a glass child? Does she feel ignored in favor of her sister and always have to be the one to sacrifice her needs? I know Craig and I try to not have that happen but it worries me that in 15-20yrs, it could be my Tess up on that stage.

Take two.....

Trying this again........

So my first attempt at blogging lasted all of the one post that I made. After all, who the heck wants to read about me. Honestly, I am a pretty boring person. But I have been branching out into some charity projects, I have a child with autism and eating issues, another child with ADHD, I am the mother of a CHERUB and I have, if I must say, a pretty decent sense of humor. So maybe no one wants to read about me, but that is okay.

So I am going to try doing this again. Maybe instead of just updating a Facebook status, I can come here and do the same.

Wish me luck!