Tuesday, January 31, 2012

Time to "Be Prepared"

I thought that was a fun title for this post as Big Brother is a Tiger Scout and one of their den rules is "Be Prepared" (in preparation for becoming a boy scout in several years). But now it's my turn. We are approaching a major change in our child-raising experience when it comes to autism. And, because of the timing of various things, the time has now come to start preparing myself.

I am speaking, of course, about Ballerina's and Music Man's imminent entry into kindergarten. It's coming in September, whether we are ready for it or not. That's 8 months away. And decisions need to be made. We need to figure out what programs are best for them. We need to determine what areas we need to focus on to allow them to be successful as their school careers advance. And that decision-making process begins this week.

Yup.....on Thursday, Dad and I are going to visit the first of the recommended programs. We will visit another next week. This one is the one that I'm hoping will be the best fit for Ballerina. It's a special education program in our home school. The teacher's reputation for working with her students cannot be questioned (although parents often seem to fear her). The students are blended with their typical peers for specials and they share lunch/recess together as well. There are further mainstreaming opportunities if it is appropriate for each student. And this program has been my target, initially for both of my kids (Music Man's ideal placement is not in this program, however, per his teachers).

However, this is a HUGE step for my Ballerina. One of the benefits / detriments to her current program is that the teacher:student ratio is 1:1. She is used to having a teacher or para-educator beside her every moment of the day to help her, even though they have been trying to encourage her to do things independently. This will NOT be true in kindergarten, regardless of which program she is to enter. This is going to be hard for her to take.

I also have been hearing things that are happening in the school that makes me nervous. I have concerns about bullying, in particular. I'm not too concerned about this at the kindergarten level -- everything I hear affects children in the older grades. But I have to figure out how this is handled and how I can be on the look-out for my children to be sure they aren't victimized. I don't want to see all of their progress fade away because I have this dream of them to be just like all of the other children.

I also have to, once again (just as I did 2 years ago), remind myself that Ballerina and Music Man are two very different children. They are both smart and lovable. They are both autistic. They are both my children. And they are twins. That's about it for their similarities. Their needs are very different and what I need to consider for each will have to also be very different. It's still possible that the same program may suit each of them, but I have to be prepared that I will not have all 3 of my children in the same school as I was hoping to see this past September.

Either way, a placement decision for Ballerina is currently scheduled for February 27. This is why we need to consider these programs now. And, since we are considering them for her, we need to consider them for her brother as well. Time will tell what we choose to do. Let's just hope that I can make my own decision, that Dad and I agree, and that their respective teams will also support that decision. But I know to listen to what they have to say and to keep an open mind.

Here we go again!!!!!!

Wednesday, January 25, 2012

The Oxygen Mask Project

When we board a plane, we all have to sit through the instructions of what to do in case of emergency. When the oxygen masks drop from the compartments above our heads, we are to secure our own before assisting those around us. However, as parents, we don't always employ this philosophy to our lives. We put our children's needs first. Our family. Our home. And, as special needs families, that philosophy seems to be magnified. Our children need more. Therefore, we give them more. And where does the reserve come from? Ourselves.

Well, there is an ongoing objective to try and change that mindset. I am speaking of The Oxygen Mask Project. Through both their website and their presence on Facebook and Twitter, they are trying to convince parents to take some time for themselves and address personal needs as well as the needs of their children. For some, these can be as big as taking a vacation without their kids. For others, it can be simply visiting a doctor to address medical issues, or the avoidance of such issues.

I have been guilty of neglecting my own needs for a very long time. I have a chronic medical condition that requires regular monitoring that I haven't addressed in far too long. I also haven't addressed my vision in a while, leading to me wearing my back-up pair of glasses for the last 2 years (which Music Man decided to bend the other day). Everything I do has become about my children and about autism.

I need to do something about that. So, I have decided to join with the Oxygen Mask Project. I am going to try to find 30 minutes of every day just to do something for ME. It can be as simple as going to the doctor. Or taking a walk. Or a drive. Watching a program on television that suits MY interests. I need to start trying to remember who I am again. This is something that I have lost over the few years. I've become an "Autism Mom". It's fine for that to be a part of how I define myself. It's a problem when that becomes HOW I define myself.

So, I invite anyone who reads this post to join me. I'm not talking about huge commitments. I'm just saying for a few minutes every day, just something that you do for your own personal benefit. I've already realized that it's not as easy as it sounds. Who here considers themselves up to the challenge?

Monday, January 16, 2012

The Day Has Arrived!!!!!!

So, I've been talking about planning the twins' birthday party for a while. Well, yesterday (Sunday) was the day.

They woke up excited and looking forward to it. They even took the change in routine and enjoyed their baths so they would be as fresh as possible for the party. Daddy had already finished decorating the cakes (but Music Man had already damaged one of them) but we were still nervous. We were expecting (at that point) 10 kids (including my 3), all but one with special needs attending a party in a gymnasium (that's designed for young children). There would be noise. There would be meltdowns. Would everyone have fun? Would Ballerina and Music Man (in particular) enjoy themselves?

We have an early lunch and arrive at the gym about 5 minutes before the party is scheduled to begin. Ballerina is so excited -- she can't wait to get into the gym and start playing on the climbing wall or swinging on the rings. She's slightly disappointed that the air track isn't already inflated, but accepts what's there readily enough. (Note, the air track is like a bounce house without the house -- just a large mat filled with air that is bounced upon, with a constant stream of air to keep it inflated -- it is typically one of the more popular things that they have at The Little Gym.) Music Man is a little more apprehensive right now. He is allowing himself to get ready for the gym, but he doesn't rush in with gusto like his sister.

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The guests began to arrive shortly after. A little boy came in and when he saw all of the equipment, he couldn't explore fast enough. He was chewing on a piece of Chewelry and really having a lot of fun. Then a couple of other kids arrived. Somewhere in this, Music Man also joined us in the gym and was playing on his preferred apparatuses (with Laurie Berkner Band music playing in the background). Before long, the party began. They sung Ballerina's favorite version of "Happy Birthday" and then the fun was on!!!!! They sung and danced. They explored. Sometimes kids stayed with the basic group. Other times, they wandered around to explore new things. They blew bubbles (Big Brother helped with that). They played more and more. And there were no meltdowns. And I mean ZERO meltdowns, not only by my kids but also the other 5 children there who are on the spectrum (there were 2 no-shows). Music Man really didn't want to join in with everyone else, but he did everything -- just on his own.

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Then it was time to pull out the air track.

This was what we were most worried about. Like I said above, the air track is like a bounce house which means there is a constant heavy flow of air. In other words, IT'S LOUD!!!!! I warned the parents ahead of time that we were doing it and pointed out some places within the gym that don't seem to be as loud, or invited them to step out into the waiting area. One of the parents decided to take me up on that offer and stepped outside the gym. Music Man couldn't get away fast enough. He went into the waiting area and found things to do there and refused to have ANYTHING to do with the air track. But everyone else sat on the white line across the middle of the track and were ready to ride it up. Ms. Katie, the party leader, threw the switch.

Yup, it was loud all right. But you know what? NO ONE WAS BOTHERED BY IT!!!!! I reached over and opened the door so the two boys who were in the waiting area (including Music Man) could become accustomed to the noise. The other boy came in after a minute or two and kept calling it "Vacuum". And you know what? That's a PERFECT description of what it sounds like -- a loud vacuum. I had never thought of that before.

These kids jumped. These kids bounced. Big Brother, who attends one of the advanced classes at this gym, demonstrated his flips (and he's really good at them). He also showed everyone how to do handstands and forward rolls. And the kids just jumped. And bounced. And laughed. And crashed. And got back up and did it again. THEY WERE HAVING SO MUCH FUN!!!!!! I couldn't take enough pictures. I couldn't believe it!!!! Not in my wildest dreams could I imagine this going so well!!!!!!

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The only part of this I wasn't 1000% happy about was that Music Man wouldn't join in. He had decided he wanted NOTHING to do with the air track and no one was going to change his mind. However, after the air track was done, Ms. Katie came out and talked to him and he came back into the gym to help stomp the remaining air out of the track. No one else had been able to convince him to come back. Not me, Dad, or his grandparents. But Ms. Katie did it!!!!!

Then it was time to start quieting things down. We finished the party in the gym and then headed to the party room to enjoy the cake. Even there, the kids were all so good!!!! Everyone was offered some cake and they were allowed to choose which one they preferred (standard yellow cake mix in the shape of a princess or a chocolate GF/CF cake in the shape of a piano keyboard). In some cases, the kids chose for themselves. In others, the parents chose for them (there were 2 kids there on a GF/CF diet).

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When all the kids left, Dad, Grandma, Grandpa, and myself were all just standing there in awe. It was done!!!! And, most important, IT WAS A SUCCESS!!!!!!!! There were only 2 meltdowns throughout the party, neither with my kids. And the mother of the child who had those meltdowns had them easily controlled and they were very short-lived and the boy still thoroughly enjoyed the party. In the meantime, all the parents who were there didn't think twice about it making the mom uncomfortable -- we have all been there and were expecting it from our own kids.

But my twins had a birthday party. And they had a birthday party that we can look back on with fond memories without any disappointment.

Saturday, January 14, 2012

The Piano Recital

Today was Music Man's piano recital. It's been over a year since he started at The Academy of Fine Arts and he's performed in front of his own class numerous times, but this is the first time he has performed for a group of strangers. What was going to happen.

Well, the recital was at 5. His class was from 3-3:45. I made the decision to stick around and just wait for the 75 minutes between the end of his class and the start of the recital. I had my iPhone, hooked up to Netflix. Party Day is in our "Instant Queue". That would buy us 38 minutes. And then he would be able to play games on the phone.

Turns out it was a wise decision. He didn't have a particularly good music class. But after taking the time to de-stress, he was ready for the new experience. We practiced on the different piano and I could already tell he was more receptive than he had been for a while. Then the recital started.

He listened to several other students, including a classmate or two. When one of his girl classmates was playing her selections, she made a mistake but didn't realize it. Music Man DID. Uh, Oh!!!! Meltdown forthcoming!!!!! But no. He just stopped rocking to the music and looked at me as if to say, "That's not right!". He listened and when she finished, he applauded with the rest of the audience.

Then it was his turn.....

All right -- his performance was completely done as "hand over hand". But this is how he is normally. He allowed me to guide his hands. There was no fuss. He just wanted to play the "Happy Birthday Song", but was willing instead to play the expected "Hide and Seek". And the bows continued long after the camera was turned off.

He was proud of himself. And I was proud of him!

Thursday, January 12, 2012

It was 5 years ago today.....

This post has nothing to do with autism. It has to do with the change that happened in my family's life 5 years ago today. This is my take of Ballerina's and Music Man's birth story, written about two weeks after they were born. That's where our journey with them began, and I wanted to share it here.


I woke up on Friday morning (January 12) shortly after 4AM, convinced that today was the day. Between then and 5 I noticed about 4-5 contractions but they were really weak. Then the contractions seemed to have stopped. I was exactly 34 weeks pregnant that day.

By the time my husband was getting ready for work (around 6:30), I was 100% convinced that, even if today wasn’t the day, my OB was going to send me to the hospital. I was checking to see if he had to go to the office – did he have any meetings? Was there anything that REQUIRED him to be there? Those kind of questions for him. He seemed to blow me off, but I later realized that he was just doing things in the office that was quick until I told him he needed to leave. He was actually telling his co-workers that he left the “crazy pregnant woman” behind. He later ate his words…..

Well, I was right – the OB sent me to the hospital after the prenatal visit for monitoring. She did mention that she didn’t think that it was going to lead to anything, but they just wanted to be sure. I told Kevin not to come to the hospital yet – I would call him as we learned things throughout the day. Well, my contractions at this point were 2-3 minutes apart, and I was hooked up to the monitors in the hospital. An hour later, they give me fluids to slow things down. An hour after that, they start giving me shots of tributiline (sp?). Contractions are still coming. Because all u/s results have been good and the likelihood of stopping labor was becoming increasingly lower we decided (as a team – my OB, perinatologist and myself) that we should do the section that day. So, I called Kevin to inform him he needed to come to the hospital.

5 hours later they finally bring me into surgery. Because I wasn’t an emergency I was bumped 3 times and then there was an administrative issue that led to further delays. But, I finally walked into the OR preparing myself that I was going to have 2 more babies that were going to be living in the NICU for at least 7 days (hospital policy is no baby born before 35 weeks is to leave the NICU).

The surgery went well. The OB asked me which of the two I wanted to be born first since their positions allowed them to make the choice. Since the girl was always thought of as Baby A, I asked them to deliver her first. At 8:26pm, I hear my Ballerina give a scream indicating she was out. She didn’t stop crying until the section was complete. At 8:27pm, the OB tells me I’ll feel pressure and then immediately I was being told that Music Man had arrived. She was 5lb 2oz and he was 5lb 9oz. Both seemed to be doing really well based on the sounds of their cries. The delivery nurse kept complaining because Music Man peed on her – THREE TIMES!!!!!!! When they brought the babies over for me to see, therefore, I was surprised to see oxygen masks on both of them. I got to see them, but I didn’t get to touch them.

While in recovery, one of the nurses came by to fill me in on their condition. Overall, they were doing well, but they were in respiratory distress. They were checking them for pneumonia, but it was most likely due to prematurity. Either way, they were both doing all right considering. A little while later, Kevin went to see the babies in the NICU and gave me a full report – they were on the CPAP to help them breathe, but they didn’t need to be intubated. She was actually doing better – 30% O2 was all she needed – For him they weren’t as convinced about at that point, but he was fine with 35%. (which we learned soon after Kevin returned from the NICU).

By Thursday, both of them were off of Oxygen (CPAP and nasal canula) and they have discontinued the IV and removed the feeding tube. They were both out of their isolettes and were bedding together. He was removed from his isolette at 8am and she was taken out around 3pm, just before we left for the day. Seeing them in the same crib together was the most beautiful thing I ever saw – this was the picture I had been waiting for since July 6, when we first learned that I was expecting twins.. On Friday, the both passed their car seat test, with flying colors. After a mild setback over the weekend, they were both released from the hospital on Tuesday afternoon.

Here are some pics.

Ballerina being evaluated (just go away – I don’t want my picture taken just now):

Music Man being weighed:

The first time Mommy sees them (Ballerina is the closer one):

Mommy and Ballerina share a moment together:
Princess Rachel

Daddy's Little Girl:


They’re finally together!!!!!!!! (Music Man is on the left and looks just like Big Brother!)

Heading home:
We are outa here Home at Last

Big Brother Moment (his reaction to the twins was “BABIES!!!!!!!!!!!”):
Daniel Daddy and Rachel Daniel Holds Rachel Daniel Holds Simon Photobucket Photobucket
Proud Big Brother

And here they are today......
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Wednesday, January 11, 2012

ARE WE CRAZY?????????? (the current story)

Birthdays. We all have them. And our kids have them. For parents, we love to celebrate these milestones. We see how much our children have grown. We see them continue to blossom into their potential. Even when we have problems with developmental delays and issues, we STILL get to watch and amaze in the wonder of their development.

Ballerina and Music Man are turning 5. A whole hand. Half a decade. And this is happening TOMORROW!!!!! When they were first born, they were each in an isolette. They both required breathing and feeding assistance in the forms of machines and tubes. But they were still two of the most beautiful creatures that Dad and I had ever seen.

Now they run around. They taunt each other, big brother, their parents and teachers, everyone. They laugh and play. Music Man can read. Ballerina loves to dress up in her fancy dresses and shoes. We have so much to celebrate. So, this year we will!!!

Yup.....we're having a birthday party. And we are having it at the kids' gym (The Little Gym of Germantown) on Sunday afternoon. We have invited all of their classmates at both schools (plus two other children in their schools that aren't in their classes but with whom they share other school activities). We also invited the two other girls in Ballerina's dance class. When we sum that up, that totals 20 children, including our 3, all but 1 fall somewhere on the spectrum. Thus far, we are still waiting on several RSVPs (which is really annoying because I have no way of contacting those families that I haven't exhausted already), but given the numbers we know for sure, we will have upwards of 18 kids ages 3 through 6 (actual current count 9 kids, all but Big Brother on the spectrum).

I am very happy that we are doing this party outside of our home. I am already going crazy trying to think everything through and plan for everyone to have a good time with minimal meltdowns. We will have 2 cakes, one for each twin. Ballerina's will be a Princess cake made using a standard mix (or 2). Music Man's cake will be a chocolate GF/CF cake in the shape and design of a piano keyboard. Both of these will be decorated by our resident cake expert, Dad (watch for my post about the party and I'll be sure to include pictures). Whenever I speak with parents about the party, I warn them about the "Air Track" (it's like a bounce house without the house). It's one of Ballerina's FAVORITE things and we can't be without it for the party, because it is HER birthday after all. But it's LOUD. So, we are warning parents so they can be prepared (and we're ready because Music Man isn't too fond of it either). We have also made it clear that for every child there, there must be an adult staying with that child. The staff at The Little Gym is NOT trained to deal with a special needs population. But we have lucked out with the person running the party. The person taking charge of our party will be the teacher who knows both of these kids the best. She also knows Big Brother. She doesn't do many parties anymore so we didn't think it would work out like that. But she managed to get ours and we couldn't be happier about that.

And, at her suggestion, we are bringing in our own music. And when we do that, what do you think that will be? Why, LAURIE BERKNER BAND of course!!!!! We purchased the CD of their latest DVD (Party Day) and between that and several other songs that we have downloaded from amazon and iTunes over the last couple of years, we have a very happy and upbeat mix. I will be burning this compilation onto CD and bringing it to them either this afternoon or tomorrow so that the teacher can listen and work it into the party.

We've done all we can. Now we just have to let it happen. We know that we can't avoid the meltdowns -- not in our kids and not in their friends. But we have tried to fix it so that there will be as few as possible. And the gym has really been helpful at giving us suggestions and helping us make all the necessary decisions. All we can do now is sit back, relax and enjoy the party.

Yeah, relax.....right!!!!!

Monday, January 9, 2012

So Much To Say.....

......Let's just take this one topic at a time.

I have been needing to "blog" for ages and ages but I haven't had the time. I still don't have the time, but I'm doing it anyway this morning. Expect to see quite a few posts in the next week or so while I catch up....

What has been happening for the last couple of weeks? LOTS!!!!! But I'm going to focus this post on a topic that has been brought up many times before....SLEEP!!!!!

But what's different about this post about sleep as opposed to the many others that I've written over the last 2.5 years? Because this time, I'm going to talk about my kids ACTUALLY SLEEPING!!!!!! Yes, I"m not really sure what's been happening, but all 3 kids are falling asleep and staying asleep. They are even sleeping in (given THEIR definition of "sleeping in") periodically. It's strange. I'm still waiting for the other shoe to drop.

When we were visiting my parents, that's when it started. We traveled to NY and CT to spend the school holiday break with mine and my husband's families. The drive to my parent's house in NY was, well, we'll call it a nightmare in terms of traffic (but the kids did just fine - it was me and my husband that were struggling). What should have taken 5 hours took nearly 8. But since we were late in arriving, everything else got pushed back, including bedtime. They fell asleep VERY quickly (within 15 minutes). And this is in an unfamiliar place on their travel airbeds. We just figured it was because they were so tired (it was nearly an hour after their "normal" bedtime).

That was December 27th. Today is January 9th. They are still falling asleep quickly. And they are still sleeping through the night. They are even sleeping in until 6:45am on occasion!

I will admit, we are dealing with health not quite 100%. There is a mild stomach bug running through our house that has affected the two of them more than anyone else and they can't seem to quite shake it. But they are acting perfectly and 100% "normal" (for them) about 95% of the time, EXCEPT for this. Does this mean that we are about to enter a new chapter in our never-ending sleep sagas????

Or did I just jinx that away....forever?