Walking for Autism

Last weekend, our family ventured out to Auburn Hills for the 6th annual Walk Now for Autism event. We found out about it only five days before the walk, and the idea was to raise money for Autism research by soliciting donations through their website.  Since we were so late in the game, Chris and I set up our web pages, and posted on Facebook, and sent emails to various people letting them know about the walk, and asking for their support.  Given that we only had 5 days to raise money, we each set our initial fundraising goals at about $300 each. By this time, some of the top teams had already raised around $5000, and had started weeks before.  We figured ours was a reasonable and modest goal to try and meet in only four days.

We were astounded and humbled  after our 5 day window passed to have raised $2360 for Team Nicholas!!  We far exceeded our goal, and were actually in the top five of all teams who walked. I don't know how many teams there were, but I would easily say at least a hundred of them, maybe more. This absolutely amazed us, and not only did we feel good about being able to help support this cause for all families with Autism kiddos, we also felt very loved and supported by our friends, families, and even mere acquaintances.  This was just another notch, in the seemingly growing belt, of positive experiences in having a child with Autism.

The walk itself was a very nicely done event. They had "team photo" opportunities, which of course we took advantage of. It's rare that I can get my whole family in a photo at the same time, and this may very well serve as our annual family portrait for this year. :-)  They had bounce houses, face painting, food, drink, music, speakers and several booths set up about resources available to families who have special needs children.  The environment was full of energy, and full of families who you felt immediately connected with because you knew that they understood what your own family goes through every day.  There were so many kids, and though there weren't many that I witnessed, the melt-downs went unnoticed, or at least understood, which is a refreshing feeling for anyone who has experience with this little "gem" of Autism.

There were two speakers who were adults living with Autism.  Listening to them speak gave hope to the families, and inspiration to keep fighting the fight.  One gentleman was a 23 year old who was diagnosed with autism at age 4.  He spoke about how his parents were told that he would never make it through high school, and would likely live in an institution of some kind by his adult years.  He spoke very clearly, and frankly, you would never know that he is dealing with Autism.  He proudly told us about how he heard the words of the doctors, and decided that  he would prove them wrong.  He not only graduated from high school, but attended Michigan State University, played on their basketball team, and walked across the stage to receive his bachelors degree in Sociology.  I came away from this  story knowing that while Nicholas' future is unknown,  so was his.  But his parents pushed, and he worked his ass off,  and the reality of his outcome helped me keep my sights and spirits high about our future.

We had a great time walking around the palace grounds with our little family.  And though we started with a stroller (for Brody) and the wagon (for the older ones,)  Nicholas and Avery ended up walking most of the entire mile!  It was really a cool and fun day, and I'm glad to have had the opportunity to participate.

 To those of you reading this who donated, we are eternally grateful.  It means so much to us to know how much love and support we have around us. And whether or not the puzzle of Autism is solved in our lifetime (I pray to God that it is,) your donation will surely benefit so many families at some point down this long road of research.   And to those who may not be in a financial position to support us in these types of events, we feel equally as grateful for the gift of time, kind words, and cheer leading that we receive from you through various outlets...emails, facebook, and by knowing that some of you read this blog.

I truly feel blessed to know the people that I know, and I am grateful to have been given the chance to see, through our "walk with Autism,"  how splendid humankind can really be.

New Routines, New Attitudes

So we are embarking upon our first week of our real new schedule.  What do you I mean, you say?  Well, until now, we've had a hectic routine of random therapy appointments (different days, different times) and drug trial appointments (oh yeah, I keep forgetting to write about the drug trial Nicholas is participating in...stay tuned), my "neruo-typical" kiddo surgeries,  follow up appointments,  brace fittings,  and somehow trying to fit in some fun where we can.  Well, finally we have begun the school year in full swing.  And I have to say, I am LOVING it (all two days of it so far!) And here is why.....

This morning, I woke up, got the kids dressed, fed, and walked Nicholas to the "big boy" bus (that comes right to my driveway at 8:15am...thank you tax dollars and tax payers....know that at least SOME of your money is well-spent.)  I then headed to the gym with my two "tiny people" (Avery and Brody.)  This is one of their favorite things to do, and it makes me feel good because they have exposure to other typically developing peers (OMG, there I go again sounding like an educator instead of a mom....oh well, occupational hazard I suppose er, something like that.)  They get to play with different toys, roam around a completely child-safe room, and wear themselves out exploring a new environment.  In turn, I get to take two solid hours to myself. I generally use this time to work out, TAKE A SHOWER...I repeat, TAKE A SHOWER (this is something that any SAHM or SAHD of any young child/children can appreciate!) and maybe even have a few extra minutes to myself to watch an episode of 'Weeds .' Yes, I'll admit it...today, I finished my shower early, and sat on the couch and watched an episode just because I could.  Go ME! (Great show, by the way!)

Anyway, I picked the kids up by 11am, took a leisurely drive through the McDonald's drive through where I ordered my large Diet Coke (I do not apologize for this people...it's one dollar, and it's a great bargain!) and drove home.  I then, in a very relaxed state, prepared lunch for Avery, Brody, and Nicholas (in preparation for his return home on the bus, of course.)  Now, to further elaborate on this, normally by 11am, I am already burned out from trying to feed people, change 3 diapers at a time (nope, Nicholas is not potty trained yet...one thing at a time here) taping Nicholas' fingers (a feeble attempt to keep them out of his mouth,) getting diaper bags ready for our morning appointments or school, administering medicines, cleaning messes,  loading the van with kids, and keeping Brody from screaming his head off because I can't pay enough attention to him at the same time that I'm trying to do everything else....eye yi yi!!!

By 12:30 lunch is finished, we all play for about 45 minutes, and then it's off to therapy.  I take all three kiddos, but it's a short ride and they are gracious enough to come and get Nicholas from the car when I arrive so that I don't have to unload three children from car seats simply to drop him off.  It's fantastic, and you can't imagine how this simplifies and streamlines my process.  Let's face it....an infant seat alone weighs about 15 lbs, and add my Chunky Monkey into the equation, and we're talking close to 40 lbs just to lug the thing in and out of the building for 3 minutes for a simple drop off. Not to mention that I have my little runner (Nicholas) and my little dare-devil  (Avery) to corral during this process of entering and exiting venues.  And yes, I am due to upgrade to a rear-facing convertible car-seat so I don't have to carry that heaving thing around, but once again, one thing at a time here!! I digress....

After the drop off occurs, we have a nice calm ride home.  Upon arrival at our "casa de Cser," Avery helps me "put Brody to bed," which I'm amazed that she hasn't figured out (or at least doesn't refute ) that this also means that she is going to bed.  Both kids are in bed by 2:00 pm, and I am...well, I am in a house of complete silence.  I can't tell you how refreshing this is. I make a point to not turn on the television....I don't want to hear the constant noise pollution that I hear all day every day.   There is no Sesame Street, no Yo Gabba Gabba, no crying or "talking" children,  and not even my own guilty pleasure shows (er, Housewives of ANY city...yes, I'll admit this to the world) and I cherish the silence so.

When 3:30 arrives, Brody has been awake for a while now, but I begin the process once again of providing fresh diapers, milk, formula, snacks, etc, and we are out the door again.  However, by this time, I have had at least another 45 minutes to myself to get dinner started, or check FB, or whatever the heck I want to do....wow, I LOVE nap time!

We arrive to pick Nicholas up, and here's the best part of my new day.  He comes out, grinning EAR TO EAR when he sees me, and I hear nothing but POSITIVE things about what he's done during his time at therapy.  They are doing what I could never do in those two and a half hours at home with the other little people in the picture, while simultaneously trying to also maintain a home.  He's doing so well, accomplishing goal after goal, and I hear about it each time I pick him up in the afternoon.

So do I feel guilty about not having the opportunity to spend the time with him like I did last year?  No, I don't. A little sad, maybe. But this is what he needs, and it's paying off.  And further, we are ALL happier for it.  I am a better mommy to each of my children because of it. I'm less stressed, and so thankful for the progress that he makes every day.   In three years of therapies, I've never had so much positive feedback, and I can't help but think that we've found a small way of unlocking the door to  the little man inside of him.  The subtle changes in his behavior, like grabbing my arm when I'm not paying attention and he needs help on his Ipad, or looking directly at someone when they walk into the room are all I need to know that we are putting his puzzle together...one piece at a time. I also realize how frigging NUTS our daily life was before this new routine started.  I would never minimize the days' of any parent who stays home with their children, but I feel that I'm finally getting my first taste of what it might be like for other parents who do not have to cart multiple children around to 50 million appointments each week....and it's not so bad!!  It has been a circus, and I knew it before, but I really  know it now.  The bottom line is that this is good. It's all good, and it's going to keep getting better!!!

And, here you have it, a  GOOD day in the world of a special needs mommy.....:-)

I.E.Phew Part II

The school year has begun, and so have the routine changes.  After a summer of erratic therapy schedules, back surgery and recovery for mom, and lots of fun in the sun at the pool, I think I'm ready for the fall.  However, the one thing I have been dreading was the daunting IEP meeting that was scheduled for this week.  Another IEP you ask?  Yes, we had one in June, but because we were requesting that his school certification be changed to ASD (Autism Spectrum Disorder) from ECDD (Early Childhood Developmental Delay....see, I told you I was learning a brand new language!) the process had to happen again under his new certification. (which to the lay-person, is basically the school's diagnosis which helps to determine which educational setting is best suited for his specific set of challenges.)

We are faced with a challenge because our district does not currently offer ASD services at the pre-school level, which unfortunately is the most critical time of learning for these little guys and gals.  (See I.E.Phew Meeting Part 1 for details in case you missed that one...) Additionally, with his new certification of ASD, he is eligible to be in a setting that has no more than 6 students to 1 teacher and 1 paraprofessional.  The significance of this is that in this setting, he would obviously receive much more one on one time from the teacher and para, and through his ABA intervention this summer, it is apparent that he is much more capable of learning in this type of environment than in a larger group setting. Unfortunately for him, his current preschool classroom can house up to 12 special needs children of varying degrees, and it is extremely difficult to meet his individual needs with so many other children to teach and care for.

As a parent, it was a very difficult thing for me to decide that I want to fight to have my child essentially segregated from his classroom population to be isolated in an environment where there will likely be very little social interaction. I mean, in the end, isn't that one of the goals of pre-school?  To help to socialize a child before Kindergarten? To get them ready for classroom routines, schedules, and structured group activities?   It's a big decision.  Some parents fight tooth and nail for just the opposite. They feel their child would be better off learning from their typical peers in a typical classroom.  Therein lies the big dilemma....which is the better choice? And in our case, will the school support my wishes for my child whether I feel strongly one way or the other?

Whether a parent feels that inclusion is the most appropriate way for their child to learn, or if individual instruction would be best really only weighs in partially in the decision making process.  The school ultimately has the right to choose where your child will end up, and this is based on many factors, which unfortunately include (but will never be discussed because it is against the law) financial implications.  On the flip side, if the parents and school cannot come to an agreement, then it is the parent's right to request a hearing, and a long, stressful and often discouraging battle can ensue between the family and the school district.  Opening this Pandora's box not only can result in a losing battle, but it can damage relationships between families and school districts, which in the end can really make things difficult for families, and worse, for the child as he progresses through his school age years. (to clarify, I do not mean to say that he will be treated poorly as a result, but just that each year, the damaged relationship may make it more difficult to secure the services that the child needs.)

These are things I did not know before I had a special needs child.  (There you go again Nicholas...slyly making mommy learn a LOT of new things about the world!)  Throughout the summer, I had such anxiety about this meeting, and what the outcome would be that I could rarely put it out of my mind.  The goal of an IEP team (which consists of the school personnel, administration, and parents) is to thoroughly discuss the child's strengths and weaknesses, and truly decide what the best programming for him/her will be.  But to muddle  this process further, there are laws with which the school must abide  (for example, educating a child in his "Least Restrictive Environment" or LRE as we old pro's refer to it) and it is not always financially feasible (due to funding or staff availability) to take a child out of this environment into a more secluded one that may best suited for his or her needs. The bottom line for us is that I want my son in an ASD specific classroom, which would require the district to send him out of our district to another school.  This costs money and requires resources that they probably don't have. I recognize and appreciate this. After all, the school is a business, and they have their own issues to deal with.   However, by law, they are required to provide him with what is referred to as "free and appropriate education" (or FAPE, again as we pro's call it...) and of course their preference would be to try and do this within their own classrooms, with their own resources.

So, now that you have a mini-background on the issues, let me tell you about my experience.  I will admit, that going into this meeting, I had very low expectations of being able to come to an acceptable compromise.     Despite the fact that we have had a very positive experience with his educators and therapists in our school district, as a parent of special needs, you hear and read nothing but horror stories about how these meetings will go.  I have read so many accounts of parents not knowing their rights, and being basically bullied by school districts into complying with their recommendations that may not have been right for their child.  I have also read about situations where the school district staff appears to be open to a parent's opinions or wishes, only to railroad them in the IEP meeting which usually results in the parents backing down from what they know their child needs, or pushing on with a stressful lawsuit.  Now, I like to have a little more faith in people than this, and generally I do.  However, I had NO idea what to expect when I sat down in our meeting this week because of some of the stories I've heard. I arrived armed with law books, key phrases, progress reports, and data, data, data.  As much as I was trying to keep an open mind, I was ready if I were to be attacked.

Much to my pleasant surprise, it turns out that things were not as ugly as I had anticipated they would be.  Did I get exactly what I asked for? No.  However, after 3 1/2 hours of discussing my son's goals for the year, and what we need to do to meet them, we came to an agreement that he would have a special schedule put in place for him in his current classroom, which will  theoretically provide him with the additional one on one time that I know he needs.  We compromised that he would try this out for 60 days, and reconvene to discuss whether or not the staff was able to truly devote the time he needs (because let's face it....they have a LOT on their plates as it is,) and to measure his progress over this period.  If we determine (together) that his educational needs are not being met in this environment at the end of this trial period, then we will discuss other options for him.

I have to say that though this wasn't my ideal situation (because of course, I would have loved for them to say that they would just go ahead and put him in an ASD classroom that is already established somewhere) I am pleased with the outcome.  I truly felt supported by the IEP team, and I can also respect the process enough to understand the actions that are being taken.  I walked away from the meeting knowing that for these educators and administrators to spend 3 1/2 hours of their day discussing the needs of my son when they have so many other children to manage, that they truly do care about him and want to do the right thing.  Everyone was very honest about what they felt he needed, and what they could provide for him, and that is the only thing I can ask for.  I feel very lucky to have my son in an environment where, despite whether or not his needs will be fully met, the educators are going to do their damnedest to try.  And I will not fault them if it doesn't happen, because I understand the challenges that they are faced with daily, and how much more attention my son requires to learn.

Only time will tell whether or not this is the right place or him, but I feel good about my relationship with the school, and I am grateful for the educators we have in place there.  Everyone has their limits given the time and resources that they have available, and I am not entirely sure if this will fully work out for him, but for the sake of compromise and being reasonable, I am willing to try.

As a side note and a conclusion to this post , I want to say to all of you special education teachers and to anyone who works in the field that it takes a very special kind of person to do what you do (not that you need me to tell you that....)  Many teachers take on more than they can handle, and I can speak to that from hearing so many of my teacher friends talk about their work, and knowing their caring personalities and how much of themselves they really do give outside of the classroom environment to their kids. But special education takes a different type of patience, and an unique ability to connect with students and parents.  There are so many politics that can impede, and my hat is off to those of you who are able to still focus on the students and how you can enrich their lives, despite the peripheral factors that can affect this. Thank you, from the bottom of my heart, to all of you reading this who have been so supportive of my family and in particular, Nicholas (you know who you are!!) Words can never express my gratitude for your heartfelt words and encouragement when it comes to his progress and achievements. He wouldn't be where he is today without your persistence.  And to those out there who do this for other children every day, I have the utmost respect for what you do each day, and I want to thank you for devoting your time to every child who crosses your path.  They need you, and  the world needs you!!

Gearing Up...

Well, clearly I have not maintained my goal of trying to write at least once a week.  Right now, with our hectic routine, and a small, beautiful, bouncing baby boy  who does not particularly like to sleep or be put down, I guess it was a pretty lofty goal.  As summer comes to close, I figured I'd try to squeeze one blog in here to sum up our crazy, but fun summer.  (Let's see how many days it takes me to actually COMPLETE this...)

(5 days later.....)

So, I had planned on dedicating an entire post to Nicholas' new ABA program, but time has gotten away from me this summer, so I will try to touch on some of the highlights of his program.  He started in June with an awesome therapist. I cannot say enough about this place, and how well he's responded.  For those who know very little about ABA, I suggest you Google it for more information because I don't think I could do it
 justice by explaining it in my blog in this limited time frame I have.  However, in a very, very tiny nutshell, it is all about rewarding positive behaviors, and ignoring negative behaviors. Programs are tailored to each child, and the goal for Nicholas is to encourage and facilitate communication.  The "work" is done at a small toddler-sized table, where they use things that motivate Nicholas specifically (in his case, his IPad with music videos,  DVDs of Yo-Gabba Gabba, or containers of pudding.)  The goal is to teach him how to request these items using sign language, or whatever works for him, and also to complete certain specific tasks when asked (for example, 'hand me the shoe,' or DO THIS: and a behavior will be modeled for him to mimic.)  It is so simple that it's complicated....anyway, like I said, if you really are interested, you can even watch youtube videos of therapy in action. I may actually post a few of Nicholas on my blog when I figure out how.  Anyway......(7 days later....ugh....)

Day One, I was leery.  This kid will not sit still at a table for three seconds, I'm thinking. Given that this is the whole foundation of the therapy, I had concerns that his would be our stopping point before we even got started.   We have to buckle him in to any seat he sits in (like for meals and school activities) in order to force him to stay there long enough to complete the activity, whether it be lunch, or circle time in the classroom.  Fast forward 6 weeks, and Nicholas is not only sitting in the chair, but coming to the table voluntarily and sitting appropriately for as long as required to complete whatever the given activity.  He has now accomplished several of the goals that were set for him, including sitting at the table (duh), stacking rings on a peg (an activity usually reserved for around age 12- 18 months, but he would not even PICK THE RINGS UP before we started,) and....(drum roll please)  signing for when he wants to watch a movie!!!  This is huge in and of itself, but also because he has an aversion to putting his hands together, and the sign for "movie" is basically rubbing your flat palms together. When they first started this with him, I was thinking, never in a million years will this be the first sign he learns.....but guess who proved Mommy wrong!!!???

There are so many other things to note that could take me all day, which include better focus, more eye contact, initiation of interaction, etc etc.  Let's be clear....he still has a MOUNTAIN of obstacles to overcome, and a lot of things to achieve, but this is the first time in almost three years of various therapies that I have actually felt that there is hope for him to really begin to move past some of the limitations of Autism, particularly with regard to his communication skills.  Along with that, we have secured a fantastic speech pathologist who visits our home once a week.  He does not use ABA teaching methods, but instead is focusing on teaching Nicholas functional communication skills using his new IPad.  I cannot even begin to say how impressed I am at how quickly  Nicholas has "taken" to the IPad.  When first introduced to it, he was not really using his pointer finger consistently to make choices or otherwise.  However, now, he will not only point to which game/video/etc he wants to watch, he also is beginning to explore navigating through the applications himself and can even play several of the spelling and matching games with little or no assistance.  He absolutely LOVES it, and I can barely tear him away from it at times.  (Though, Avery manages to do this from time to time on her own!!) While it functions as a learning tool for him, it also has become a favorite pastime of his to watch One Direction (yes, the boy band....don't ask...) videos, among other Top-40 artists (whose music must be mommy approved!) on his new little device.  This has actually made dinners out easier, because he will generally eat pretty easily as long as he's distracted with a video, or "movie" as we now refer to them since this is the sign that he has learned. Yippee!

The bottom line is that much progress has been made, and I am excited for Nicholas to not only continue his ABA program, but also increase the time that he will be spending there beginning next week from only 4 hours a week to almost 12 hours a week!  He will have quite the schedule,  attending pre-school in the morning, and therapy in the afternoon. He will, for all intents and purposes, be gone until 4pm with the exception of a brief hour that I will have with him at lunch.  I feel sad and excited about this at the same time.  I can't believe how fast it's happening, and I'll miss seeing my little man during the day. However, this will give me peace of mind that he is getting what he needs in order to continue learning and progressing, and will allow me to spend some quality time with Avery and Brody which will be time dedicated ONLY to them.  In one sense, it will "normalize" my parenting experience.  I will not be constantly dragging all three kids around to therapy waiting rooms every other day.  I will be able to do activities with the younger ones that were never an option because we were always getting ready to leave to go somewhere, or already somewhere other than home.  I have to admit, I'm excited at the prospect.

We shall see how Nicholas holds up to his new schedule, but I have every confidence that he will do superbly!  AND, as an added bonus, maybe his sleeping will improve!?!?! Further, maybe my mental state will improve.  Actually, it already has.  I'm so glad that we've made this choice for him, and just hope that the progress continues steadily!!

That's all for now, and thanks for reading our story.  Oh, and I did just figure out how to add a video of Nicholas' ABA therapy. (CLICK THE LINK BELOW TO WATCH)  It's a long one, but even if you watch only the first few minutes, you can get an idea of how this intervention works (and if you are super interested, then you have about a 15 minute video clip to watch because I don't have time to figure out how to edit and shorten this at he moment.)  Just keep in mind when watching, that when we started this, he had none of the skills shown in the video (placing puzzle pieces, stacking rings, etc) and this was only about 6 weeks prior to when this video was taken.  Can't wait to see what else he shows us!!  Thanks for reading and watching!

https://www.dropbox.com/sh/iio8650l3x92q9p/8VZMKpCCRF/9.14.MOV