Friday, October 26, 2012

The Never Ending Career Search

I know there's a lot about the kids that I need to post about, but for right now, I want to write a "ME" post.....

You see, for the last couple of days, whenever I have some time alone (usually in the car), I have decided what I want to do with my self-proclaimed title of "Parent Advocate".  I believe I've known this for a while....I just needed to tailor it down to what I believe are my strengths.

I want to work with parents.  Specifically, parents who are going through the process of a child being diagnosed with an Autism Spectrum Disorder (ASD) or parents with children recently diagnosed with an ASD.  I love the kids.....don't get me wrong......but I don't know how much I personally can do to help them compared with the great teachers and specialists that are out there.  But I can offer something to the parents.  I can listen, and I can understand.  I can explain it, and not as a doctor trying to explain these things to a parent feeling lost, but as a parent who has been through this all.  I am very good at researching information and I can find details for people to help them understand what their lives are about to become and help them figure out ways that they can help their children.

I kind of do this now.  I run the Facebook page We Care About Someone With Autism and I regularly get questions like this.  Sometime they stay on the public forum, other times, we exchange emails or Private Messages and I think I have really helped quite a few people.

About a year ago, I thought of starting up a support group for local parents that would meet during the school day.  But I thought about it and realized that I have no clue not only how to start up such a thing but that I really don't know if people would want to come to something like that.  I think that it would benefit many, but it's hard to sit around a table and discuss things like this with strangers.  And it's even harder when the person sitting at the head of the table has no appropriate credentials to her name other than a parent.  And I would hate to ask people to pay for such a service, even though I would have to in order to pay for premises and make a little money on the side, which to be honest, wouldn't hurt my family.  So, this isn't really the right direction for me to look.

I have now laid out (in my head) a perfect job for me.  I even think I know the organization that would want to hire me.

Now I just need to figure out how to make myself qualified for such a position.

Saturday, October 20, 2012

Remembering How Hard It Can Be

There is a post today on SPD Blogger Network written by a South African Mom talking about her concerns about needing to raise her twin boys differently because of the issues that they face (one has SPD [and a few other issues] where the other does not).

As I read this post, I was transported in time.  I was remembering visiting preschool programs for Ballerina and Music Man.  I was remembering driving around in the car because as I visited these programs, I knew they would be placed in different places because I knew that no one school would best suit their individual needs.  But, in my heart, that wasn't what I wanted for them.  I wanted them to be together.  In my heart, I knew that they needed to be together even though my brain was telling me that I needed to consider their individual needs first.  I remember crying every time I thought if it, how I was going to have to face the fact that one would be going to Program A and the other to Program B.

And I remember those meetings.  I remember at the end of Ballerina's meeting making the decision to send her to the program called CAPP, which was definitely the best placement for her.  But instead of thinking that, it was that final nail in the coffin -- they weren't going to be together because CAPP was a BAD choice for Music Man.  I remember taking a 10-15 break between the two meetings and going over to an observation area and watching them both in their classroom, trying to pull it all together.  And I remember starting Music Man's meeting when they were enumerating all of the reasons why we needed an IEP (I realize this is a part of the process, especially in an initial IEP meeting, and they weren't pulling out things that we didn't already know), and I remember them asking me at the end of this if I needed a moment.  They thought I was upset about all the reasons for Music Man's IEP.  But that wasn't the case.  It was the reality of Ballerina's placement and the consequence of separating these two that was making me struggle to hold it together.  And I remember not being able to fully pay attention throughout his meeting because I just couldn't deal with it.

I cried about it that day and night.  By the morning I thought I was all right.  We had made the best decision for each of them.  They were going into programs that would address their weaknesses in ways that played to their strengths.  And for Ballerina and Music Man, they were different areas and different strategies.  And I remember talking to the other parents about the whole IEP experience (since their initial meetings were upcoming).  And I was doing a good job holding it together.  It wasn't much of a struggle.  And I'm giving myself a mental pat on the back......I'm getting over my emotional hang-up and am ready to do what I know is the right thing.  But then, when I put Ballerina and Music Man into the car, it all came flooding out.  It was like I was back at the beginning.  Separating them was WRONG!

I also remember calling our case worker that afternoon while the twins were napping and Big Brother was having his "Quiet Time" (for he no longer napped).  I remember asking her when (and if) this would ever get easier.  And she pointed out to me that I knew what the right answer was, I just wasn't ready for it.  Eventually, the two would come together.  She couldn't tell me when, but I knew she was right.  And, I also knew that if things weren't working out, we could look into making a change.

I'm not sure when it happened.....when it became all right that they were in different schools and different programs.  But eventually, it was all right.  That didn't change the fact that I was grateful that they are now in the same school, and I'm sure that the togetherness is part of what I was trying to achieve.  But I stopped looking at them as a unit together when it came to their IEPs and allowed myself to separate them into the two unique individuals that they are.

Don't get me wrong.....losing that dream of them being together for so long hurt, and it still does from time to time.  But I see their individual growth, and I know that this was one of the times where my heart was wrong and my head was right.  My dreams for them are my own.  I need to give them a chance to realize their own dreams and those may be with our without the other.

My babies aren't babies anymore.  They are growing up.  And they are becoming amazing people.

Wednesday, October 17, 2012

So Much Progress, So Far To Go

Today was our first review meeting for Ballerina.  She has been in a general education classroom for 7-8 weeks and we needed to sit down as a group and figure out what's working and what's not.  We had agreed to do this during her placement meeting / annual review at the end of last year.

Yesterday, I went to visit her in her classroom.  I wanted to see what her teacher sees so I could understand the things that she was bringing up in the supporting paperwork.  And, we all know that many children display something different while they are at school as compared to when they are at home.  And her teacher told me that in so many ways she has made some great improvements, especially in these last couple of weeks.  Her outbursts are less frequent and less intense, she has become much more compliant (especially for her classroom teacher) and they are discovering some of her passions.  However, her focus is a real issue.  She has a very difficult time following anything greater than 2-step instructions and she needs someone constantly prodding her to get her tasks completed.

But I watched her complete tasks.  I watched her complete worksheets that involved multiple tasks (coloring, cutting and pasting) along with working on an academic concept (rhyming).  But every minute or so, the para who was working with her had to prod her to get her focus back.

But the meeting started this morning and it began with the principal explaining that at the start of the school year that many on her team were concerned about her placement in general.  General education classroom is extremely demanding and it was thought that perhaps it was beyond what she was ready to handle.  However, these changes in these last couple of weeks showed them all that yes, a general education classroom is the right placement for her.  We just have to make a couple adjustments to her plan to allow her to be successful.  Knowing that we weren't going to make such a change (even though I strongly suspected this would be the case), it definitely helped to put me more at ease.

And transitions are still a problem (although they are greatly improved).  She is no longer considered a menace to herself or her classmates with her constant body dropping behaviors as she was when the school year began.

It was great to listen to her entire team talk about all of the improvements she has made thus far this year.  We did increase the number of hours of support because, honestly, she needs it.  She was originally assigned 15 hours/week, but in practice she needs (and receives) 25 hours/week.  By putting this into her official plan, it helps the school find the needed staffing and makes it more likely that she will get a dedicated staff member which will give her the consistency that she needs.  The intent is still to try and reduce it over time, but for now, she really needs the help.  Without it, she is not able to stay on task.  One of the things I did observe is the 30 minutes or so in the morning where she is working independently.  She was unable to complete any tasks.  And when I asked if this was true regardless of the "center", her teacher informed me that it is.

Her classroom teacher is going to attempt a few simple tricks to see if they can improve her focus, including introducing some background classical music for quiet work times.  Since she seems to enjoy music so much, perhaps it will help keep her calm and allow her to focus more on the tasks at hand.  In addition, we are initiating a Formal Behavior Plan to ensure consistency across various staff members.  Hopefully, these will all contribute to her success.  We also agreed to meet again in December to discuss whether these efforts are successful and to, if necessary, make further modifications to her plan.

Now it's time to turn my attention to Music Man's meeting, which is scheduled for next week.  His meeting will be a full annual review which will likely be a bit more intense.

I need to learn to control myself in approaching these meetings.  They always cause so much anxiety.  You would think I would be used to them by now.  Perhaps this next one will be the one that makes me realize that this process is in place to help my children and I shouldn't get so worked up about these every single time.

Monday, October 15, 2012

Always Something To Worry About

Well, if it's not one thing, it's another......

First it was as they were getting ready to start kindergarten......could Ballerina handle the general ed classroom?  Were we pushing Music Man too far with this near-mainstream program?

Then it was the would everything work out?

Now we're back to's time for another meeting.  On Wednesday, we're having Ballerina's first Review Meeting to determine what's working, what's not and what (if anything) needs to change.  And, trust me.....there's a LOT that needs to change.

I keep hearing bits from her teacher or from one of the learning specialists who she's been working with -- she needs help for all academic time, she needs a behavior name it.  I was hoping things would be getting better at this point, but it seems like things are just staying the same.

I will be visiting her tomorrow, trying to be an invisible observer.  I plan to be there before she returns from PE (Physical Education) and will stay until after she leaves for lunch (so about 1.5 hours).  I will find a place to sit and I won't move.  I won't ignore anyone, but I will do all I can to not draw attention to myself.  I will hopefully get to see what is REALLY going on in that classroom.  I will get to see a couple of transitions, both into and out of the classroom.  And maybe I can start to understand what the teacher is dealing with.

I hate being in the dark like this.  By this time, when Big Brother was in kindergarten, I was already a classroom volunteer.  I can't bring up the subject until the meeting is over on Wednesday.  Hopefully, the teacher will consent and I'll be able to begin that role next week.

I just hate not knowing what's happening in the classroom because I'm not sure I'm getting an accurate picture in the reports.  She seems happy to go to school and happy to be picked up.  But I'm not sure what she's getting out of the classroom.

I just need answers.

Thursday, October 11, 2012

Happy Birthday!!!!

Today is my birthday.

When I was growing up, birthdays were things I always looked forward to with such relish.  It wasn't unusual for me to stay up to 12:29am (my actual birth time) to be the first to wish myself a Happy Birthday.  As I've gotten older, that anticipation has lessened quite a bit.  Especially after I cross decade marks.  But now, I'm 41 years old.  I'm happily married with 3 wonderful children and a dog.  And I spend most of my time doing what I can to make their lives as wonderful as possible.

Birthdays have become days to think about where I am and where I want to be.  What I have been doing right and what needs to change.  There are always many things on both sides of that equation.  For example, I need to work on controlling my patience and not just handing over phones when the kids get to be too much.  But I applaud myself for developing new strategies that have helped Ballerina and Music Man make this transition into kindergarten, at least from the at-home-end.  I applaud myself for listening to their teachers and fighting for what I know is right, even if that wasn't an easy thing to do.  I applaud myself for teaching my son that lying is not tolerated, a lesson that I believe Big Brother has learned quite well these last few weeks.

Over the last couple of years, I have used my birthday as an opportunity to make a change.  A couple of years ago, I proclaimed myself a "Parent Advocate".  I'm still not sure what it means (officially), but I feel I have done a decent job at making that change effective.  The Autism-based Facebook Page that I run has grown to over 2,100 members.  When people ask, I offer my advice based on my personal experience.  I have answered questions for other friends who have asked.  I have educated many about Autism, and plan to address Big Brother's Wolf den (Cub Scouts) to educate them about Autism as they are likely to run into individuals affected as they grow.

And I fight.  I fight for my children.  Every day.  I make sure that they are getting the services that will best help them.  I lose sleep over IEP meetings because I want to be sure that they have the opportunity to succeed and gain their own independence.  I have learned to not jump to conclusions (even though that is still my instinct) and to listen before I act, at least in an official capacity.

When I was at my brother's wedding, several family members asked me if I planned to go back to work.  My answer was always that I kind of already had with this change.  I would like to find a way to actually be paid for doing this (like everyone, we can use the supplemental income), but because my experience is not something that comes from a degree other than in life, I'm not sure that I can find a position right now.  I want to help parents, especially parents who are in the early stages of a diagnosis. Parents who either suspect or have just been told that their child is on the spectrum.  I want to help them to see that it's not the end, but the beginning.  I want to help them to see the POWER of that diagnosis.  I want them to understand that Autism is NOT the end of the world, no matter where on the spectrum a child falls.  I want to point out the success stories that you can find anywhere, but is somehow very difficult for a grieving parent to see.

You see, I've BEEN that parent.  It took a long time before I was able to see the positives of Ballerina's and Music Man's diagnosis and not just going through the motions.  And I know that the fears never fully go away.  And because of it, those are the people who I feel I can most benefit.  I still have to figure out the best way to make that happen, but I'm more sure than ever that I have found my "professional" calling.

If anyone has any suggestions, I'm all ears!

Wednesday, October 10, 2012

An AMAZING Week!!!!! (long post --- squeezing it all in one)

For those of you who braved reading my last post, you know that I was going a bit nuts about the road trip we were about to take.  And for those of you who have been reading here for a while, you know that I was worried about how Ballerina and Music Man were going to handle the roles of being a flower girl and a ring bearer.

Well, both events are over (the road trip last week taking place BECAUSE of my brother's wedding).  And I couldn't have hoped for anything better than we got!!!!

I'm not going to say that everything was perfect.  It wasn't.  And I didn't expect them to be.  But I also expected things to be harried and I was ready for meltdowns everywhere I turned.  That is NOT what I got.

First of all, we started on Wednesday with 12.5 hours in the car.  We did take breaks, and some of them were longer than others.  We arrived at our hotel in Peru, Indiana around 9:30pm after this very long drive.  We had no potty-issues through the entire drive (well, not in terms of accidents).  Music Man did decide that he was NOT fond of public restrooms and the unexpected noises that they contain, and he especially didn't care for the self-flushing toilets!  But, we were able to convince him to do what he needed to do and he was rewarded with snacks, gummy bears, and a McDonald's Chicken Nugget Happy Meal.  All-in-all, the drive was uneventful.

When we went to visit family on Thursday, we also weren't sure what to expect.  We went to Dad's aunt's house (about 5-10 minutes from the hotel) which happened to be where Grandma and Grandpa were staying.  I had an appointment to get my hair done (I had to make sure I was GORGEOUS for my baby brother's wedding after all).  There was a playground near the salon, so Dad dropped me off and took Grandma and the kids over to this spot so they could run around in the sun and just be kids and have fun.  They enjoyed this!  They later went back to Dad's aunt's house to play and wait for me to be done (because when you're trying to hide so much grey hair, it takes a couple of hours).  They kept themselves busy with books, phones, and the piano.  They also ran around the back yard a bit.  When I arrived, I had a quick lunch, had a talk with my mother-in-law and aunt-in-law (she's a Mary Kay consultant, and my source for make-up).  We then took the kids back to the hotel for a quick swim in the indoor hotel pool and then back to aunt's house for dinner.  By the end of the evening, the kids were acting up a bit, but nothing too terrible and we were able to get them settled back into the hotel for the night.  They fell asleep VERY quickly (who were those children?).

The next day was another travel day.....bye bye Indiana, hello Novi, Michigan.  It was going to be about a 4 hour drive so we took Big Brother around to see some of the places that were important to his family (his family owned a mill, community has a covered bridge, etc).  We showed him the sites and then got ready for another long drive.  The weather didn't cooperate much, but still the ride went smoothly enough.  We got ourselves checked in and as soon as the kids' beds were set up for them, they fell right to sleep.

Saturday was when things really got going.  The wedding rehearsal was in the afternoon.  The rehearsal dinner was in the evening.  We needed to attend both events.  After all, I was a bridesmaid, Dad was a groomsmen, Ballerina was one of the 3 flower girls, and Big Brother and Music Man were the ring bearers.  We had to play around with the order of who walked in and with whom (Ballerina didn't want to walk in with the other two flower girls, so it was decided she would walk with me [and my handful of gummy bears]).  Music Man was happy enough to walk with Big Brother though.  We taught them to come into the sanctuary and sit down in the front row, where Dad's parents would be sitting (they love spending time with Grandma and Grandpa).  We had a backpack with books all ready for them (but for the rehearsal they had their phones) and of course, they had gummy bears.

Overall, the rehearsal went well.  We were able to relax a bit and head back over to the hotel before dinner and give everyone baths before putting them into their nice clothes.  And the rehearsal dinner could have gone better, but it also could have gone much worse.  They didn't really come across as being Autistic children......just children who were bored because too much had been expected of them that day.  We left on the early side, figuring that we didn't want to push our luck.

Uploaded from the Photobucket iPhone App
(Music Man wearing his "tuxedo" shirt)

Sunday was the wedding.  I had to be there early for them to do my hair and be ready for pictures.  Dad brought the kids with them when he arrived early in the afternoon after taking them to a McDonald's near the hotel with a HUGE play area.  They were able to run around and play (while still in their every-day clothes) and get some energy out.  When they arrived at the synagogue, they read a few books to the bride's parents so Dad could come out for pictures and they were ready to get dressed.  Big Brother couldn't wait!!!!  He wanted to wear his suit and shoes and show his brother and sister how they were supposed to behave.  So, he got dressed first.  Then Ballerina wanted her pink dress.  I swear, she was such a pretty thing, it made me so happy (especially since we had problems getting her a dress -- perhaps I'll tell that story another day [I don't think I told it here yet]).  Music Man also got into his suit and was getting ready for the big moment.

Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App

It had started to rain, so we had moved the picture-taking to inside the sanctuary (which actually may have already been planned).  This was when they were taking pictures of extended family and bringing the children into the wedding party photos.  I had made a request to get a picture of the 5 of us since it's so rare that we are all so dressed up.  While the photographer was taking pictures, Dad and I each gave our phones to someone to maximize the chances of getting a single good picture.  My cousin managed to snap this one.  I'm happy with it!

Uploaded from the Photobucket iPhone App

But soon the pictures were done.  I was asked to sign the Katuba as a witness, so I joined my bride and groom at the table in the temple library and participated in the ceremony.  We watched both the bride's and groom's fathers sign the Michigan Marriage License and then the bride's sister and I each took our place next to the bride and groom, and we each signed our names to the Jewish marriage license (for lack of a better description).  All that was left was the ceremony.

Uploaded from the Photobucket iPhone App
(notice Big Brother's silly face in the background)

The wedding party lined up for the ceremony.  This is when we had our biggest problems.  You see, Ballerina had decided she didn't want to walk in with me after all.  She didn't want to walk in at all.  Music Man was doing fine.  Because we changed the order a bit (groomsmen coming in before bridesmaids) it was decided that Music Man would walk in with Dad (since he had the gummy bears).  With her behavior, it was also decided that she would walk in with Dad and they would both be seated together in the front row.  I didn't see their entry toward the Chuppa, but I was told that Ballerina wasn't dropping her flower pedals, until reaching the end of the aisle.  Then a few pedals fell from her basket and she insisted on going back to retrieve them.  Then she wanted to walk up to the Chuppa (which was not her place).  There was a slight issue to get her to realize she needed to stay with her grandparents, but that was resolved quickly and she was fine for the rest of the ceremony.  Between regular infusions of gummy bears and a selection of their favorite books, we were all able to enjoy a beautiful ceremony.

The reception was nothing short of fun!!!!!  There was dancing to be had!  And there were places to explore.  Music Man had some difficulties at the start of the reception because it seemed to be a bit too much too quickly.  But once he realized he could go onto the dance floor and do his own thing, he too had a GREAT time.  But Big Brother and Ballerina were on the dance floor until they truly were exhausted.

Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App
(after the bride and groom were lifted into the air, Ballerina insisted on having a turn too)

Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App  Uploaded from the Photobucket iPhone App

On Monday morning, we said goodbye to the whole family, took another trip back to the playplace at McDonalds, and got on the road.  We left Novi, Michigan at about 11:15 in the morning and arrived at our front door with 3 sleeping children just before 10:00 in the evening.  We were all exhausted, but we had an AMAZING trip!!!!!!!

Monday, October 1, 2012

Insanity Has Taken Over!!


Yes, things are totally insane right now!!!  We are less than 2 days of a HUGE road trip, and the incessant planning and checking and re-checking and shopping and packing and unpacking to be sure we have everything and re-packing and checklisting......they are all in full force!!!!!

It's currently Monday afternoon.  Bright and early Wednesday morning, we plan to be on the road.  We are taking a road trip.  We're going to Indiana first to visit with Dad's family.  I don't think many of them have ever met Ballerina and Music Man and just a few more have met Big Brother.  Since my Mother and Father-in-Laws grew up in the same small town in Indiana, many in their families have stayed reasonably close.  And we're hoping we can find a way to see as many as possible without fully overwhelming our kids.

Then, on Friday, we're heading to a suburb of Detroit, Michigan for my brother's wedding.  All 5 of us are in the wedding and the saga in getting Ballerina's dress is a story for another time (when there's time).  But it's straightened out now and she is perfectly happy with her dress and can't wait until Sunday when she gets to wear it for the big day.

But Dad and are are compulsive planners.  And every time we are serious about planning, things tend to go smoothly.  We make regular car trips to New York or Connecticut.  Sometimes we go to Pennsylvania for a long day or a short weekend.  But in general, we know we can pick up things that we forget along the way.  We are determined to not need that crutch this time around.  We are going to pack correctly and make sure that everyone has everything they need for the whole trip.

So, we have the checklist for packing.  And we have the checklist for loading the car.  And we have the grocery list to be sure we picked everything up we needed from the store.  And we made sure that the dog would be well cared for (including a vet visit today to make sure her immunizations were up to date).

Tomorrow Dad will be home and we will make sure everything is set (with the exception of the actual packing) so that, when the kids go to bed, we can just pull everything together and have them waiting by the door.  I can bring Domino to the "Doggy Hotel" as early as they open and Dad will be able to make several trips out to the car, loading everything in it's proper place so we can pull out what we need when we need it.  We can also set up the numerous movies, books, stuffed animals, homework assignments, etc. so we can do things as we're driving.  The snacks for the road have to be where we can easily get to them.  And, hopefully by 10pm, we'll reach our destination in Indiana.

But before that happens, I'm off to pick the kids up from school.  I have some PTA responsibilities that have to be met, Ballerina has her dance class tomorrow afternoon, Big Brother has scouts tomorrow night and I'm supposed to be at a PTA Meeting (which will probably NOT happen).  All clothes worn since Saturday will need to be washed so they can be packed, but we need to remember to leave something home so they can dress the following day.  Despite going to the grocery store today, there is likely going to be another trip tomorrow, Dad has to pick up his tuxedo (because, like I already mentioned, he's in the wedding), and we have to get iPods and iPhones properly loaded.  I also have to finish up my popcorn duties for the week for the local cub scout chapter.

Can you tell I'm going just a bit nuts right now?  INSANITY!!!!!!!!!!!