I.E.Phew! Part III

So, the saga continues.....our trial 60 day period has elapsed (see I.E.Phew Part II) and the time has come (and gone) for a reassessment of Nicholas' classroom situation.  As this time has passed, Nicholas has adjusted well to his new schedule of 2 1/2 hours of instruction in the morning at pre-school, and another 2 1/2 hours of instruction at his ABA center.  And in this time, he has made amazing progress (of which I have posted several videos of during the course of this 60 days.)

At the last I.E.P meeting, his new goals for school were set based on the rapid amount of progress that he had made during the summer months using an ABA approach.  At that time, he was only receiving this intervention 2 days a week, for 2.5 hours a day.  Beginning in September, this jumped to 5 days a week for 2.5 hours a day (plus his pre-school time as well.)  We did our best to create appropriate and measurable goals based on his very quick progress over the summer, but none of us could have ever predicted how much MORE quickly he would progress with five days of therapy vs. only two.  All of this is good news if you look at it from the perspective of Nicholas' progress.  We are ALL thrilled that he has been able to learn so many new skills in such a short amount of time, and not only that, but he has given us HUGE insight into his cognitive abilities based on the receptive language skills that he has demonstrated in therapy.  This is obviously something to celebrate!  But, then again, is it?

Here is the ultimate problem.  It is fabulous that Nicholas has made such great progress over the last 60 days, and further, it is great that he has not only met, but exceeded most of his goals (mainly speech related) that were set in his IEP in the fall. However, it is very clear to me, based on the limited amount of progress made in the classroom before having started ABA therapy, that his progress has much more to do with what happens in the 2 1/2  hours per day of ABA vs. the 2 1/2 hours per day of instruction in the classroom.  Now, this sounds like a negative statement towards the school staff, and that is not at all how it is intended. He has a fantastic teacher, and his therapists are fabulous and they all love and support him to a point that I never would have anticipated in a school setting. (Well, in fairness, I had no idea what to have expected since he's my first in school, but I think they are awesome!)  However, despite this, there are several other differently-abled kids in this classroom, and simply too many to allow the kind of consistent, daily, one-on-one instruction that best suits Nicholas' learning style.  Therefore, at the end of this 60 day trial, I have still requested that it be considered that he be moved into a "more restrictive" (a bad word in the public education system) classroom that is geared specifically towards students who have ASD, and also one that is a full day vs. 2 1/2 hours per day.  Sounds like a pretty reasonable request, right?  Well, it is and it isn't.  That's where it gets complicated.

Much to my surprise, the team and the "powers-that-be" (after another 2 1/2 hour IEP meeting) have agreed to entertain my request.  This is a  HUGE deal....why? Because in our case, it means sending Nicholas to an entirely different school district since our current district no longer houses an ASD pre-school program. For a district to consider this is a complicated matter, because they are, in a sense. admitting or conceding to the fact that they do not have the appropriate resources available for him, are not meeting his needs in their current available setting, and also potentially taking on an additional financial responsibility in order to send him to an out of district location.

In our case, there are differences in opinion regarding whether or not his needs are being met in the classroom.  After all, he IS meeting/exceeding his IEP goals, which would indicate that he is receiving the services and attention that he requires in his current classroom setting to learn. On paper, this sounds about right, and also makes it extremely difficult (both financially and politically) for a district to even consider this process of evaluation for sending him to a MORE restrictive environment.  However, my son is very fortunate to have educators/therapists who are truly looking out for his best interests.  The ones who see and work with him on a daily basis, despite what this looks like on paper (and not for lack of effort on their part, or even lack of some legitimate progress due directly to their hard work) have still been willing to say that his achievements, while great in the last 60 days, may have more to do with carry-over from his private therapy than from their own influence.  Think about how difficult this would be to come forward as an educator and say to your peers, to your supervisor, and to a parent... that you may just be falling short in some areas that could really benefit a child.  This is basically admitting failure, which is not at all how I feel about this team who is working with him.  They have not failed him, but unfortunately have only been given a limited amount of time/resources to work with him, and  for this reason are willing to admit that this may not be his best scenario, and one that will actually maximize his potential as a student now, and in the future.

As Nicholas' Mom, I am so grateful that they have stepped up on his behalf to imply such a thing, simply because they really believe that he could make more progress in a different setting.  I recognize, as a parent, that this is an extremely difficult position for the school to be in, as well as for the individuals who care for him daily.  As I've said before, as a parent of a special needs kiddo,  you hear horror stories about how difficult it is to advocate for your child in the school system to be sure that his or her potential is maximized in the programming that has been decided upon for them (correction: that I agree to in an IEP meeting.)  And my reality  is unfortunately living up to the fact that this is going to be difficult.  It is still stressful, and a struggle, and frustrating when you think about how much time must be put into this one aspect of his being.  However, I fully recognize how lucky we are that he has a team of educators behind him who truly care about his well-being, and his potential to learn.  They know him, I know him, and we all know where he needs to be.

That said, at the end of the day, just because this option has graciously been considered,  it does not guarantee that he will end up where I would love to see him.  There is yet another process ensuing (I will surely follow up with IEPhew: Part IV soon enough....ugh...) and we must meet yet another set of criteria, and have another discussion in order to make this happen. At this point, we are waiting for the potential school to do an evaluation of Nicholas in his current classroom, and make a decision as to whether or not they feel he would be a good fit for their program.

Whatever the case, it is out of my hands for the time being, and I feel that our district is doing the right thing by considering this as an option for him.  I know how I want this to end, and I also know that it may not end the way I hope.  Until then, I can only put my faith in the fact that the educators who will make these decisions will truly base them on their expertise, and what they feel is the best thing for my child.  And until then, I will wait.....


This just in:   That was a much too depressing note to end on, so I must share this completely unrelated video with my readers.  If you are a FB friend of mine, you may have seen this already, so I apologize for the re-play, but this is just too good not to share on my blog.

As I said on my FB status two days ago:  "This warms my heart and breaks it at the same time....I left the room for a few minutes and came back to find this happening...."    This is my sweet, sweet two year old with my very Au-some 4 year old.....if this doesn't make your heart burst, nothing will.....Love her!

Telling it Like it Is

Ok, so here it is....a rant.  I try to stay positive about life to keep my sanity, but I write this blog because people wonder what it's really like on the inside of an Autism family, and this morning, at 4:51 am, as I have already finished my shower, and already watched the complete Toy Story movie with Nicholas, I'm going to tell you how it really is/can be.

Here is just a tiny glimpse into the night-life of this family. (Which I've shared before, but it's ongoing, and evolving at this point.)  Now, granted, it does not happen every night, and in fact, it's happened less lately than it has in several months (thanks to drugs??? See Drug Trials and Tribulations)  But when it happens, it happens, and it's bad.

After a long day with the kids,  I am usually wiped out. It is rare for me, anymore to stay up past 9 pm during the week, mostly because I'm afraid of who is going to interrupt my sleep on that given night, and I just want to maximize my zzz's while I can.  This means that my husband and I spend very little time together to begin with, because dinnertime and bedtime activities fill the hours when he comes home from work around 5:30pm, and by the time the kids are down, the kitchen is cleaned, and I have had 15 minutes to look on my computer at whatever I need to, I have hit the wall and can't stay up any longer.  So you have that....

And THEN, there are the nights when someone wakes, just for a quick few moments (and when I say "someone," I mean Nicholas or Brody....Avery is, and always has been my sleeper, thank God) and these nights aren't so bad because at this point, because after 4 solid years of interrupted sleep from having newborn babies in the house, it's just what I'm used to.

But THEN, there are nights like tonight.  And tonight was a doozie.  I decided to go to bed at 8:00 pm with the intention of watching a couple of my guilty pleasure shows from the comfort of my Kingsdown mattress. However, I was so exhausted that I didn't even make it to 9pm (at least I don't think I did??)  Chris, as usual, watched his shows on the couch and came to bed whenever....and while usually I hear him come in, I was OUT. I'm generally one of those people who wakes easily, and then can't settle back to sleep for hours, but sometimes life just catches up to me, and I'm done.

So, of course, around 1 am, I hear that distant, familiar whining noise coming from Avery's room,  which Nicholas now shares because we were making our attempts to get BRODY to sleep through the night without interrupting the other kids' sleep (which has btw, been much better, but there are still a few wake-ups here and there.) Nonetheless, the combination of sleep training an infant, along with Nicholas' erratic (at best) sleep habits has made night-life in our casa more than a bit of a challenge.  But anyway, back to the here and now.... this whine is Nicholas' way of saying he needs something....milk maybe? Perhaps he just had a bad dream? Or maybe he has an earache?  Honestly, I usually have no frigging idea what he needs, and I think that's where the fury and frustration starts to build in me before this process of trying to get him back to sleep ensues.

Not fury at him, but fury that he has to feel like we have no idea what he wants, and he's right.  It absolutely KILLS me as a mother, because I'm so frustrated and sad that I can't soothe him or meet his needs immediately. Frustration that knowing that depending on how long it will take to get him to sleep, I know the clock is ticking until one of the others gets up, therein leaving me with even less sleep to deal with the normal daily routine of handling three children under age 4. (Not a good combo, for the record.)  Stress that during this unpredictable process, Nicholas will wake Avery, and now we'll have two to deal with at 2 am.  Grief that this could be a problem for us for years and years to come, and I see no light at the end of the tunnel. And then more fury, because why in the HELL does this whole Autism thing have to be happening in our family??? My blood pressure rises immediately when I go into the room to try and settle him and wonder what his response will be.  So, there are the slew of super honest and very real thoughts that go screaming through my mind each time this happens.

But I digress, because sometimes, this little whine only lasts for a few minutes, and he will go back to sleep. Or sometimes, it will last for hours, and never go to sleep.  But he also doesn't get upset or wake his sister in this case, and it's almost like he is just in there talking to himself. This scenario, we have learned to deal with, because he doesn't get out of bed, is safe in his room, and you can't force someone sleep if they aren't tired.  With Autism, circadian rhythms are allegedly not intact, and these kids don't respond appropriately to the social cues (like darkness) that tell their brain it's time to sleep.  (This is one theory...but then again, it seems like there are theories for everything that is Autism, and no fixes.....oops, sorry...here comes my bitterness seeping out, but please, it's now only 5:19...give me that at least. )  

And yes, to those who wonder what we've tried, we've tried it all (short of Benadryl because the drug study that he is currently a part of will not qualify him if we use that as a sleep aid. It can affect their study data.  However, the medicine he is taking as part of the study allegedly help with sleep......)    Regular bedtime routines, regular rituals, baths, lavender oil, melatonin (which he still gets,) letting him wear headphones to hear soothing music, massage/deep pressure, weighted blankets, and God only knows what else that I can't remember at this moment because I am now running on 4 hours of sleep....none of them work flawlessly.   And since he now has a full day of school and therapy, he IS exhausted at the end of the day. He does not nap, and he works his little butt and brain off ALL day, and this issue is not a matter of getting him to sleep. That has not been a problem at all.  Half of the time, he passes out on the couch just before I'm ready to put him to bed anyway.

Anyway, back on track here....this night, he woke at 1 am.  My husband (who I will credit here as being very good about getting up with the kids) popped into the room to check on him, came back to the room, and I thought it was going to be one of those nights when he just either drifted back to sleep, or "talked" until it was time to get up for school. However, at 3am, the whining began again, but more intensely this time.  We let it go for a bit, but eventually, when we heard Avery now chatting it up in the room too, my husband went in to dissolve the "situation."  However, Avery was now WIDE awake, and Nicholas was PISSED.  He clearly wanted something, and neither of us knew what it was. When Nicholas is pissed, this whining turns into hitting, kicking and thrashing.  And I won't lie, I am not a nice person when I get kicked in the stomach and slapped in the face at 3 am. Sorry, I'm human, and that's just a fact.   Previous fury already in place (see above,) this physical assault sets me over my oh so steep edge that I am perpetually dancing near.  So here it goes....I get frustrated, Nicholas gets frustrated, Husband gets frustrated, Avery cries, Chris and I yell at each other because both of us are so damn tired and have no idea how to diffuse this situation that we can only take it out on each other, and the chaos ensues from there.

So what was it that he wanted??? Well, it wasn't milk, and it wasn't music, and it wasn't to be in his bed, that's for sure.  After a failed attempt at putting him in bed with me to watch a video on the tablet (which generally will calm Nicholas) and hastily sending Chris to the guest bedroom so at least one of us could sleep (where he eventually ended up with Avery anyway because she was now awake, overtired, and crabby) I finally gave up.  Nicholas was still not happy because he still didn't have what he wanted...whatever that was. At this point, the adrenaline level in my body was just beyond the point of even TRYING to continue this battle for the purpose of me getting my sleep, and clearly (as he's proven in the past) Nicholas can sustain an entire day of school and therapy after having been up all night anyway.  SO, I gave him what I eventually knew he wanted.....his Ipad.  Yep, he was having a COMPLETE fit at 3am because he wanted to play games on his Ipad.  Ugh....really??  So, what else was I gonna do? Out of sheer exhaustion and defeat,  I gave it to him, grabbed Avery from Chris' (er, the guest) room, put her back to bed (after a small fight on her part) and decided to take a shower at 4am and make a 10 cup pot of coffee, of which I plan on drinking most of today.

So, what is the moral of the story?? Because I can't just write to bitch about my life...it's just not my thing.  The take-away from this is that today, when you are driving down the road and someone is a total a**hole and cuts you off or zooms by you like a bat out of hell, or if you are out Christmas shopping and someone just pushes their way in front of you at the checkout, or takes that very last item on the shelf that you came specifically to buy, just give them the benefit of the doubt.  People have things going on in their lives, good, bad or ugly, that affect their personalities on any given day, and you do too.  Mine, for today, happens to be sleep deprivation, and I don't think I'll end up being a very pleasant person today around 2 pm when it finally hits me. I don't deal well with it, and I don't like it.  So, rather than assume someone is a wart on the rear-end of society when they do something inappropriate in public (not to say that I am going to be this person doing something inappropriate, but I have been known to let a little road rage sneak out of me from time to time) my situation helps to remind me that maybe that person was up all night the night before against their will, or are stressed because they can't pay their bills, or just had a loss in their lives.  You just never know.

And with that....I'm going to pour my second cup of coffee.....

Happy Birthday to My Babies!

I owe my lack of posts lately to life, and birthdays!  My two oldest just shared a birthday party this a couple of weekends ago, and while it was a little crazy, it was just what I wanted it to be--easy for me, and fun for the kids.  My awesome little Nicholas, just turned four (on the 4th) and my sweet and sassy little Avery just turned two (on the 2nd).  Both of my little ones were election day babies, and I remember when Avery was born, shortly after thinking that this "shared birthday" thing would be such a bummer for them as they got older.  Now that time has passed, and we have learned more about Nicholas' personality, I actually consider this timing to be a huge blessing.

I can remember Nicholas' first birthday party. I was so excited, and at the time, we had very few kids toys in my house.  We threw a huge celebration at my home that was buzzing with friends, family, and all of their kids.  It was a good time, and we got all of the appropriate pictures for a first birthday party...except one....the "cake smashed all over the face" one.  I remember vividly when everyone gathered around his high chair, singing happy birthday,and putting the cake with the one, bright burning candle in front of him.  I knew he would not blow it out, and I knew he would not eat the cake.  But what I didn't know, was that he would actually be upset by this little ordeal.  When the song finished, I blew out the candle for him, and just hoped that he might smash the cake in his hands or something.  I mean, everyone was just staring at him and waiting for something to happen.  And, it did.  He became agitated, and did not want ANYTHING to do with the cake.  I can remember feeling the pressure of that moment, and I didn't like it.  And in retrospect, he didn't like it either.  And so, I will not do that to him again.

Instead, this year, we had a gathering at a place that I knew both of my babies enjoy, and made it less about the cake and presents, and more about the fun for the kids.  Avery loved the attention of the birthday song, and she helped blow out Nicholas' candles when the time came.  She got to have her cake, and eat his too!  (ba-dum-bum!) And the kids had an absolute blast playing in the giant (and unfortunately very crowded) play-place, but without the pressure and expectation that the "typical" birthday activities of blowing out candles and opening presents often bring for us.  And so, this is likely to be our new birthday routine....finding a social place where both of my kiddos can have a special and fun time, and celebrate their birthdays in their own, unique ways.  And this is why I now feel it is a blessing that they will share their parties. As they grow, I can see Avery being Nicholas' little protector in this situation, and taking over the "expected" activities for him. Not because I don't see him ever being able to, but I don't see him really wanting to (in the near future, at least.)

God works in mysterious ways, and I think He gave me my little Avery at exactly the right time.  He knew that birthdays might be a challenge for Nicholas, and decided to make sure that he had a buddy to help him out, and to share this special and important time with him. She will grow up to be Nicholas' little angel, I suspect.  Yes, they don't necessarily play together now, and he pushes her, and she shoves him right back. Siblings will be siblings, after all.  But I know down the road, when she can better understand that her brother might need a little extra help sometimes, that she will be up for the challenge, and Nicholas will grow to love and appreciate his little sister in ways that other siblings may not.

So here we are, 2 and 4 years later, and I feel blessed to have both of my little election day babies. They have both grown so much, and I am so very proud of them.   So happy, happy birthday to my sweet, perfect little beings.  You have enriched my life in ways I could never have imagined, and I will always think of you both as my very special gifts!

Tomato, Tomahto

I consider myself to be somewhat of an infant when it comes to this parenting a child with autism thing...er, wait, maybe it's supposed to be parenting an autistic child? Many times, in my research and reading, I have come across this internal debate within the special needs community as to what the proper terminology actually is when referring to one who possesses traits of autism. (is this okay to say?)

I must admit, in the beginning, just after receiving the diagnosis, semantics was the least of my concerns.  However, recently (probably because I am reading more blogs, and fewer medically based articles) I have encountered this little head-butting debate in more than one arena, and have actually started to consider the implications and the arguments behind it.  Now, for those of you who are autism parents reading this, I'm sure this little word war is nothing new to you. And though it is also not necessarily new to me either, I recently began paying more attention to this discourse because, well, I WRITE A BLOG!   I began to wonder if between my Facebook posts, my conversations, and my published blog posts,  I have ever really just pissed someone off because of my choice of words when referring to my son's autism, since I basically use both phrases ("has autism" or "is autistic") interchangeably. And believe me, I have read some pretty heated arguments and know that many people feel as strongly and polarized about this topic as they do about our current presidential candidates. I will never know who I may have offended, but I'm curious all the same.

At any rate, here is my take on the subject, which I plan never to discuss again because I find it to be pretty unimportant and insignificant in the grand scheme of things that autism parents already deal with. But here goes....

Here is a (very) basic synopsis of the debate at hand:

Some believe that by saying that someone "is autistic," it defines and labels them as being ONLY that- autistic.  Further, they claim that by describing my son, for example, to someone as "being autistic" rather than as  "having autism,"  my word choice will actually influence the way people perceive and respond to him.  It is suggested that if you place the word "autistic" before the person, that it becomes a label, vs. if you place it after the person, it then becomes merely a trait of that person.  And to be fair, this is an overly-simplified explanation of the debate.  I've read some articles and posts that have gone into much more specific detail about the  implications of how one chooses his or her words when referencing autism. And frankly, these articles and posts practically put me to sleep once my head stopped spinning from trying to decipher exactly what the heck points they were trying to make! You truly need to be an English major just to comprehend the technicalities of some of these arguments.  Kudos to those who have the time to scrutinize the English language to such depths, but you will not find me hovering over a grammar text book to check your work.

Despite the likely never-ending debate, the bottom line to me is this:  It matters not how we interchange these terms.  If you mention the word "autistic" or "autism" to describe someone, whether before or after the person's name or appropriate pro-noun,  I believe that people who are outside of this minority community that has been touched by autism, have already formed (or not) their opinions based on what they have or haven't read,  or have and haven't been exposed to.

If my son has a melt-down in the middle of the grocery store in front of someone who has no clue about autism, and they react by giving me that awful, judgmental "you-suck-as-a-parent-control-your-kid" stare, do you really think that if I walked up to them and said, "Just so you know, he has autism" it would make any difference to them and how they respond to us if I instead said "Just so you know, he is autistic?" I think not.  I mean, if the person is ignorant, the person is ignorant.

As a parallel,  if I share with someone, for example, that my cousin "is diabetic" rather than "has diabetes," I don't think it makes a bit of difference in how someone responds to my cousin either. Their response is based on what they know about the condition, and not how I choose my verbiage.  If one understands what diabetes is, he or she likely isn't going to offer my cousin (who is fictitious, by the way) a huge piece of chocolate cake upon our first visit to their house.  However, if he or she has no clue what diabetes is, that person may very well, to be polite, offer a sugary snack to my cousin, unaware that this food choice may not be something in which my cousin may indulge.    And further,  the fact that I may describe my cousin as "being diabetic" by no means implies that he is diabetic and nothing more.  This line of thought seems absurd to me, because if I use any adjective to describe anyone, (e.g. "He is hilarious") this does not imply that he is not also sensitive, kind, or possibly a complete jerk.  It takes more than one word to define any person.

Thus, I feel it is the same with autism. One word does not define any person, EVER.

More importantly, regardless of which way I choose to share this information about my son and whatever the circumstance,  the fact is that arguing over sentence structure is simply not productive. Why not, instead of debating with others about how to refer to a person with autism, use that opportunity to instead educate someone further about what autism can be like for the child who is struggling, the adult who has overcome, or family who is tirelessly supporting that individual?

Perhaps I will develop a preference for a specific "terminology" as I grow out of my infancy of being an Autism-mommy, as I have actually read that some autistic adults do have their own preferences of semantics (which consequently all vary from person to person....) But for now, I think it is a silly discussion to devote time to, given all that we, in the autism community, have on our plates. (And as such, this will be the only time I ever address this in my blog)

To each his own, and I am certainly not suggesting that people are not entitled to their opinions. My point, however, is that for ME, it makes not a bit of difference in our world, and I will continue to refer to my awesome, funny, and brilliant son as also being "autistic," or as "having autism," depending on how it best fits into my sentence.  And for this, I will not apologize.

Fifteen Things from My Head to Yours

I will refer to this as a mini-post, because generally I have a specific topic to discuss. However, in the interest of attempting to overcome a short bout of writer's block, I decided to just do a little list of random things about me (which I started several days ago,) and things that I think about from time to time.  Maybe not a Pulitzer Prize winner, this one, but a little glimpse into my head nonetheless.  Thanks for reading, even when I don't have something deeply profound to say! :-) And here you go....from my head to yours.....

1)  Just because I don't mention my other kiddos often in my blogs does not mean that I don't love and enjoy talking about them just as much as Nicholas. I just save that for other forums because my blog is a tool meant to raise awareness about raising a child with autism, and not just a family diary.

2) I am paranoid that my youngest son will be diagnosed with Autism. Though he is developing typically thus far, that "1-88" scares me, and so does the fact that it is more frequent in boys. I scrutinize every move he makes (or doesn't make...like the fact that he is not yet babbling at 9 1/2 months old--doc says not to worry....)  I attribute this behavior to what I like to think of as  "post-traumatic-Autism-Diagnosis-Syndrome"  What are ya gonna do?

3) Watching my 2 year old daughter start to talk, dance, play and be so animated gives me joy in a way that I cannot describe. I didn't know how fun watching a child develop their own little personalities could be so unbelievably awesome and exciting!

4) Watching my daughter start to talk, dance, play and be so animated twists the dagger that is permanently wedged in my heart, because it reminds me that my son cannot express himself in this same way, and he will always have to work harder than his siblings at this.

5) I talk to Nicholas as though he were  a typical four year old boy. It pains me every single time I ask him how his day at school was, or what he likes about his favorite music videos that he can't answer me. But I know he's in there, and I know he WANTS to tell me, damnit!!  And so I will ask until he does....

6) I am not always positive. Sometimes I just want to pull a blanket over my head and cry in a corner somewhere. And sometimes I do.

7) Kids' birthday parties are my nemesis.   If I'm quiet at these events, it's because I am torn with joy that my daughter can/will participate in the activities at hand, and sadness that my son is probably hanging out just "doing his thing" somewhere in the vicinity.

8) I feel grateful that I was blessed with my youngest son (who was a HUGE surprise!!) so that my daughter will have a sibling to play and interact with until we can unlock Nicholas from his isolated world.   I hate to admit this, but it is what it is.

9) I do not feel sorry for myself.  You shouldn't either.

10) I am addicted to reality Housewives of any city.  My ideal night is putting the kids to bed, cracking a bottle of wine, and losing myself in the trivial (usually) problems of the uber rich. (I qualify this with "usually, because I just learned that one of the Housewives of NJ's son was recently diagnosed with Autism....not so trivial after all.)

11)  I feel that I have become somewhat of a walking spokeswoman for Autism awareness, but I can't help myself.  Everyone deals differently, and my way is to absorb and regurgitate.  Sorry if I annoy you, but you don't have to listen. :-)

12) Most days, I enjoy my life.  I love my kids, my husband and my little family dynamic.  Yes, it's more complicated than many people's, but it's mine and I am embracing it!

13)  I've always dreamed of writing a book one day.  Now I think I might just have a topic....or two, or three....

14) I love making my kids laugh. I will do anything it takes, regardless of how ridiculous or silly I look to hear the sweet sounds of their little giggles! Nothing in the world makes me happier!

15) I am still trying to figure out what I want to be when I grow up.  I now see myself down the road helping other families in some capacity who are touched by Autism.  My passion for this has emerged thanks to my little man, and I think he's once again given me a new and improved perspective on life. Funny how things work out....

Is it Time for a Time Out?

Scene I:
Nicholas is very contently standing at his toddler-sized table that now is stationed in our living room as a semi-permanent eating/Ipad viewing area. This is where he spends most of his time now when he is home.  Avery, being the very energetic  and inquisitive two year old that she is, meanders over to the table to see what Nicholas is doing on his Ipad.  He's spelling....using his favorite app First Words Deluxe, and impressing us with his skills.  Avery now decides it's her turn to play on the Ipad.  She shoves her way in between Nicholas and the table, and takes over like she's Steve Job's technical assistant. Nicholas does not appreciate this one bit.  He grabs the shoulders of her Hello Kitty shirt, yanks her from the table, and in the process, knocks her to the ground. He then resumes his activity, completely unaware that this is unacceptable behavior. Crying ensues, as Avery gathers herself and her broken heart from the floor.  Mom, observing the entire ordeal, weighs the options of how to handle this.

Scene II:  Brody is on the move!  Crawling all over the living room, and getting into everything.  Nicholas, who is usually playing with his Ipad, has been given a "time out" from technology for a little while because, while mommy loves that we have found something that entertains AND teaches him, sometimes we all just need a breather from the constant noise of his favorite apps and music videos.  Brody finds himself entertained by a knee high activity center that I bought several months ago.  It has lights, music, and pieces to manipulate.  He's innocently playing away on the floor, when Nicholas barrels over, grabs his shoulders, and pushes him from his spot in front of the activity center onto the floor, and takes over the toy.  Once again, Mom watches the scene from across the room, unable to get there quickly enough to stop it before it happens, and then wonders, how I am to teach Nicholas that pushing his siblings to get what he thinks he needs right that second is NOT OK?

So, there you have it.  I have referenced in my blogs the "complexities" of raising a special needs child among his typically-developing peers, and this is a perfect example of what I'm talking about.   Not only do I lack personal experience in general with disciplining my children (because until now, we didn't have the "terrible twos" or anything of the like due to N's developmental delays, and as such, no real reason to "discipline" him) but I also will now start to experience these so-called "terrible twos" with my daughter in a setting where I know that I need to be consistent with discipline for her sake, but may not always be able to discipline N in the same way as her. And I imagine that this will become confusing for her (and eventually for Brody.)

Frankly, I'm not sure what I should realistically expect from N just yet in this area of behavior.  At his last evaluation for Autism, the results indicated that his cognitive abilities were around that of an 18 month old, and in some cases less.  Now, do I really believe this to be true?  Yes and no.  In terms of being able to spell, recognize words, match and sort, I know he is well above an 18 month old, and possibly even a typical 4 year old.  However, I don't know if he understands the concept of right and wrong, or even simpler, sharing.   As is typical for ASD kiddos, his impulses drive his behavior, and this is not really his fault, or meant by him to be bad behavior. He is wired differently. He is just responding to what his body and and mind tell him to do.  If he yanks Avery away from his Ipad, it's not because he is being stingy and doesn't want her to have his Ipad. It's because he was in the middle of spelling a word in his game, and he NEEDS to finish that word.

And as I sit here writing (and re-reading) this, I'm finding it extremely difficult to even explain to my readers in my own words why he behaves the way he does at times. So how am I to explain this to a two year old when she finally figures out that he is being treated differently than she is? Why is he not getting a time-out for pushing his brother, when she just got one for the same reason?  It's not to say that I will never punish him, but this chapter is only just beginning for us, and I don't have a guidebook (or even a friend) who can tell me how to approach punishments with an autistic toddler. I don't think he would even get it at this point.  I'm sure I'll be scouring the web for blogs, or books on the topic, but the fact of the matter is that he will likely NOT be treated the same as his younger peers, and one day, they will recognize this. They will start to ask questions, and they will start to have feelings about it.  I don't know if they will grow to be loving and protective of their brother, or if they will be angry and resentful.  I can only hope as their mother that they feel as loved by me as they perceive that he is, and learn to have compassion for him and for each other.

These are the things I think about at night, and these are things that keep me awake into the wee hours of dawn at times.  I don't have the answers, and like the rest of this journey, I'm confident that I'll figure them out along the way.  But if you happen to have the Cliff's notes to this one, feel free to send them my way!

A Video Says a Thousand Words

I absolutely have to share these with the world!! I am so proud of my little man, and how hard he's been working over the past 14 weeks.  For those who have just joined in reading my blog, N started ABA therapy this summer, and would barely sit at the table, let alone do any real "work" during the sessions.  And now....well, I'll let these videos speak for themselves. I was shocked and amazed! 

 I must just say one thing though.  As a mommy of an autistic toddler, I have all but given up (and purposely avoided) reading anything to do with typically developing peer milestones.  However, after seeing these videos, for the first time in two years, I actively sought out this information because for the first time in two years, I actually began to wonder if N is ahead of the game in some areas! (I'm still not sure, but regardless, he seems to be right up there with the rest of his 4 year old gang...and he's not quite 4 yet!) 

Oh, and to the doctor who said that Nicholas' issues "would likely be more cognitive than physical,"(see Drug Trials and Tribulations,)  I would like to let you know that Nicholas is going to prove you wrong!!! That is all. 

Please enjoy these movies, and feel free to say wonderful things about N's awesomeness! (Says a VERY proud momma!!!)  :-) (Oh, and sorry for posting only links to the videos instead of the real thing, but it was taking too long to upload all of these.  Make sure to check all 5 out if you have time! ) 

Video 1 Taken in late August

The rest of these videos were taken in late September....even in THAT time a huge jump in progress...

Video 2

Video 3

VIdeo 4

Video 5

Drug Trials and Tribulations

At last, a post dedicated to Nicholas' drug trial.....we've only be a part of it since May, so I've only procrastinated a tiny bit!  I guess I should explain from the beginning, so here goes....

Once upon a time, not long ago, Nicholas had a primary diagnosis of Hypotonic Cerebral Palsy.  This is basically a blanket term to describe his motor delays (like the fact that he didn't walk until almost age three, among other more subtle but notable things.)  Now, when we first heard this diagnosis almost 3 years ago now, I was confused, but a little relieved because at the time I thought this explained ALL of his issues personality "quirks," and that this was going to be the end of our search for what exactly was going on with him. For example, he has a severe aversion to foods that are not familiar, he doesn't like to put his hands in a mid-line position, he likes to spin and hang his head upside down....etc. etc. etc. When he was a baby, he constantly arched his back, and had very low muscle tone, and had (and still does) an array of sensory issues.  It was explained to me that these various "quirks" could all be a result of the CP because often the brain does not fire correctly, and this can manifest in a million different ways (despite the fact that his MRI showed no physical brain damage.)   At any rate, we accepted this diagnosis at the time, and took the recommendation of the doctors to pursue physical, occupational, and Speech therapies for his various issues.

We did these things diligently for a little over 3 years, and during that time, his biggest accomplishment was finally learning to walk.  It took a lot of our (and his) time and dedication, and along the way, I endured 2 pregnancies and births of new children in the midst of these hundreds of therapy sessions. It was a crazy ride.

Because CP (in our minds anyway) implied that most of his issues were to be physically related, walking was one of our main concerns, and we were elated when he began to finally walk on his own, learned to get up from the ground into a standing position, and do all of the things that he should have been doing related to walking in the previous two years. However, after the walking goal was achieved, my focus for him began to shift into teaching him to provide some kind of functional communication to us of his basic needs. My belief, at the time, was that the low muscle tone (related to the CP) was the reason he was not able to talk.  I did not even let Autism enter my mind.....until we made our annual doctors appointment with our physiatrist.  I will never forget the blow to my head and heart, when after he witnessed and celebrated Nicholas' new skill of walking for the first time, that he said bluntly to me, "I think you will find that most of his issues down the road will be less physical, and more cognitive." I froze....I couldn't even ask what he meant by that, because I was afraid of what his answer might be.  As I had been told a million times before, there is no crystal ball to see where his future will lead, so we can't tell you the extent of his disabilities, and basically, good luck with that.  It just plain sucked (and still does.)

After this visit, I started to read about Autism.  Obviously, at the age of almost three, with no voice,  this concern had entered my mind and I finally felt ready to acknowledge it.  Though part of me had suspected this long before that moment, my feeling was that even if his diagnosis was Autism vs. CP, the therapists that he sees would treat the symptoms, not the diagnosis. (In fact, that's what they all told me when I would mention getting him evaluated for ASD.) In other words, I felt that we were already getting him all of the help that he needed, and further, insurance would cover it under a CP diagnosis, and unfortunately this is not true under and Autism diagnosis.

Fast forward to this May.  Leading up to this point, my concerns about Nicholas' language had grown exponentially, and I had been reading non-stop about Autism and ABA Therapy, which is the only scientifically based therapy approach proven to help those with Autism. (this is not to say that other therapies don't help other kids, but just that this is the only one that has research and data to back its success.)  There was no doubt in my mind that he fit the bill for the diagnosis.  However, the evaluation for Autism is extremely expensive (sometimes in excess of $3000), and the therapy runs anywhere from $40,000 to $60,000 per year....and it is NOT currently covered by insurance. So, what were we to do???

Well, I had heard of a local and well-known neurologist in the Autism community who often is involved in research studies for autism.  I decided we would start there. Upon arriving, he did a full interview with us, and observed Nicholas for several minutes before making his recommendation.  He said that his wife (Mrs. PhD) was currently conducting a drug trial on Autistic children between the ages of 2 and 6 years old. He felt this might be a good option for Nicholas, because not only would he have a full and very thorough evaluation for autism (at NO CHARGE to us!!), if they qualified him for the study by diagnosing him with Autism, the drug that these kids have been taking now for about 3 years (we were at the tail end of this study) has been extremely successful in the areas of social skills and communication, which are his two largest areas of deficit.  Without boring you with too many of the details, the drug acts as serotonin (of which Autistic people tend to have low levels in various parts of the brain,) and helps to stimulate the specific neurons responsible for social behaviors, cognitive and communication abilities. Things like attention and focus improve, eye contact, and reductions in repetitive behaviors (like in kids who rock or flap) have been observed.  The doctor even noted that in some children who had only two or three words before taking the drugs had begun speaking in full sentences within weeks of taking it.  We sat in awe as we listened to the doctor. Sounds too good to be true, right?

This was, perhaps, the very first time in our entire journey that I left a doctors office filled with hope instead of drenched in tears and anxiety.  I called the study coordinator immediately after walking out the door of his office, and we had him scheduled for his evaluation, which included the various standardized tests administered by a psychologist for Autism, as well as a full physical, blood work, and a PET scan.  This was no joke!  In fact, this was much more thorough than any eval we could have paid for.  At the end of the 3 hour visit of evaluations, and our second half day visit to conduct the pet scan, the psychologist entered the small hospital type room where we sat with Nicholas, who was contently watching  PBS on the television mounted on the wall.  My anxiety was high....this was it.  We will know once and for all what his diagnosis is, I thought to myself.

She chose her words carefully, and as she handed me the Autism Speaks "First 100 Days" kit, she confirmed what I had, yet again, suspected for months.  I think she expected more of a reaction from us, but for some reason, in that moment, I simply took the thick packet of information about Autism from her, and nodded for her to go on.  She explained his test scores, and said that he qualified under every test as having a diagnosis of Autism, and as a result, they would be happy to accept him into the trial.  My emotions were very mixed at this point, but I think because of the hope that the neurologist had given me, to have a diagnosis such as this made at the same time as being offered a nugget of hope that a drug might be able to help, him changed my reaction significantly from what it would have been had we just gone to a clinic and been told "Yep, he's Autistic.  That will be $3000 please. Thank you and have a good life."  That is basically how I felt his diagnostic process had been up until this point.  Short, sweet, and with no direction or hope.

The caveat to this story is that while Nicholas was accepted into the study, it is conducted in a  double-blind fashion, which means that we do not know if he is receiving the medication currently. His possibilities were to receive one of two different doses, or a placebo.   In the first weeks of the study, I (and others) did notice a significant increase in his ability to be attentive, and much improved eye contact.   I still see these things, but since then, I have not noticed many differences since he began the drug. (He is definitely not speaking in complete sentences!)  However, having begun his ABA therapy concurrently, I see drastic improvements in him in general, and perhaps it is because he is able to focus better due to the drug, and the one on one intervention of the therapy keeps him engaged long enough to learn. Or, maybe I'm imagining it all, and he's on the placebo.  We may never know.  However, beginning next week, the voluntary portion of the study begins, which means that he will definitely receive the drug (if he isn't currently already) and we just will not know his dosage.  This phase will go on for 6 months, and you can bet I'll have my extra-sensitive eyes on him watching for any changes.

At the end of the day, I think that this is a great opportunity for our family to help do our part in finding a cure or at least a treatment for Autism symptoms.  It was a difficult decision to put him in the trial, not knowing if he would even get the drug for the first six months. This was because the doctor who recommended us to this trial offered to simply put him on the drug under his care if we wanted to be sure that he was receiving it as soon as possible (rather than wait it out for the first six months of the study.)  At his age, timing is critical, and the earlier the better in terms of receiving the drug (so says the doctor. )  But we opted to try and do our part for science, because it is important, and it is the right thing to do.  Time will tell if this new phase of the trial will show marked improvements in his symptoms.  It's just a wait and see game. And the fact of the matter is that there is no miracle cure for autism (YET!  I will keep hoping!) Until then, we will give him his medicine twice a day as prescribed, and pray that someday, somehow, this will help him or someone else.

***The big scary PET scan machine....he took it like a champ!****

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

What a Difference A Year Can Make

This week, I had the pleasure of watching my son in his new (well 6-week in) ABA therapy program.   I had missed a few sessions, and was amazed to see the significant improvements that he had made in only the three sessions I had missed. At some point, I will post in more detail about what these improvements are, and what ABA is all about, but sitting in on his session yesterday made me really think about how far we have come.  For so long, our biggest goal for him was to walk.  We weren't sure it would ever happen, but never lost hope in therapy and his efforts to try.  It took a LONG time, but finally, last summer (almost a year ago exactly,) Nicholas took his first steps across our yard, and brought us to tears.

Now, a year later, we are setting goals for communication.  This process can be long and grueling, and seems so overwhelming since he has to learn in such a systematic way.  I often wonder if it will ever happen, and how long it will take until we will hear his sweet little voice.  I get scared that sometimes it won't ever happen. Only time will tell.

But this week, after thinking about how far he'd come since just last summer, I decided to look at some of his old videos.  After watching them, and realizing that he had made so many gains this year, it gave me hope for his next goal of communicating.  I decide to make a little video montage to celebrate his one year anniversary of walking, and to remind myself of how long it took, but how determined he was, and to keep the hope for all of his future goals.  

So anyway, that said, here is a little journey I'd like to share.  And as a side note, I write this little entry with three children making noise, and hanging off of me, so I apologize for this not being perhaps my most prized literary masterpiece.  I hope you enjoy the video, and remember that good things come to those who wait!!

Nicholas' Journey to Walking! Click This to View Video!

A Tribute to Brian

It has been a while.  Between back surgery and technical issues, I have not been able to write.  In this time, I have been thinking of a million topics to share, and where I would start.  However, today, with a very heavy heart, I am writing for someone else in lieu of any of these other things that have crossed my mind in this time away.

Children, no matter what the circumstances, are a blessing and an enrichment to our lives.  Young or old, as a parent, your children have changed, shaped, and enhanced your life.  They add a purpose, and a direction.  Once you have a child, nothing else matters.  You will do anything it takes to love them, care for them, and maximize their potential in life.  At times, I have been praised for all that I do for my son Nicholas, because he is in need of so much more than my other children. While I truly appreciate the sentiment, the fact of the matter is that most parents of sound mind would do the exact same things for their children.  It is just what you do.

While I have cried for my son many times, and mourned the loss of the idea of what I once thought his life would be, I have come to accept that this picture of his life may or may not look like what I had originally hoped for him.   We can never control the twists and turns of life, and having him has taught me to let go just a little bit.

However, today I am deeply saddened.  A child has been lost too early, and I hurt for his family. I cannot imagine the intense sadness and loss that they are feeling.  What some don't realize, with special needs children in particular, is that despite their "deficits" (whatever they may be), and the difficulties faced by both the family and the child,  these children also have personalities, traits, quirks, and their own ways of being silly, funny, loving, sweet, and happy. Despite the struggles and heartbreak that come with any life-long diagnosis of a child, that child still adds a dynamic to a family that is ultimately positive, and he still brings joy to the lives of his family in so many ways.

Often, when I write, I focus on the struggles of raising a special needs child.  But today, I would like to instead, honor Brian.  I didn't know him, and I don't know his family either. But Brian, by his own nature, has created a silent bond between my family and his. This is a gift that he gave us.  I have seen pictures of him, and have followed his story for only the past several months, but his battle has been life-long.   Though I've never met him or his family in person, I can tell you that from what I've read about him,  he was a fighter, and so are his parents. He had so many obstacles in his way, and it is apparent that he worked hard, with the help of his family,  to push past them.   I have to believe that in this process,  he taught his parents that they are stronger than they ever imagined they could be.  This was a gift that Brian gave to his parents.    Brian also has a brother.  And thanks to Brian, his brother will grow up to be kind and compassionate to other children and families who he encounters  who may be struggling with difficulties like his brother's.  This too is a gift that Brian gave this world.

In his time here on earth, it is clear that he has touched the lives of not only his family and friends, but  of perfect strangers as well.  I did not have the honor to know him personally, but feel blessed to have had the opportunity to know of him, and to learn from his journey.  My heart aches for the loss that his family, friends, caregivers, and others who knew him are feeling.  He must have just had that effect on people, because not even knowing him, I feel a loss as well.

Brian, thank you for enriching our lives.  May you be at peace, and be free of the pain and struggles that you have experienced here on earth.  You were once an angel to your family and friends here on earth, and you will remain an angel to them now from a different place.  As someone whose life you have touched without having met me, I feel honored.  I wish for you in heaven, freedom from your earthly ailments, and all of the things that you weren't able to enjoy in this world.  You will not be forgotten. Your memory will forever live on through your friends, family, and the many lives of those whom you have touched.