IEPhew!!! The Conclusion.....I Hope!!

IEPhew!!! is RIGHT!!!  For those who haven't already seen my rantings followed by my emphatically excited posts on Facebook this week, we were informed today (AGAIN) that Nicholas has been accepted into the center-based ASD pre-school!!!!

I actually had anticipated making this announcement via my blog two weeks ago when we were informed the first time, but something in my gut told me to wait until the IEP meeting had taken place.  Even after we visited the classroom, met the teacher, and learned all I needed to know about the setting to know that it was perfect for him (or at least better for him) I was still hesitant to tell anyone. 

Sure enough,  the IEP meeting was scheduled for last Thursday. I had my Sunday-best laid out, hubby was planning to come home early from work to watch the babies, and I even washed my hair in anticipation of being in public!! But then, a mere 12 hours before the meeting, I received a call that sent me over my edge-of-advocacy.  Apparently, the receiving district, due to a "personnel change," was now questioning the referral of my son to their program, and whether or not he was a good fit for their classroom.  Why? Because of the fact that he had been meeting his goals on the current IEP (among other reasons, of which, I am frankly too tired to detail here.)   REALLY????  Didn't we already go through this once already??? (see IEPhew I, II and III...I'm too tired to even insert the links!)  So, to keep this post to a minimum and to keep my readers awake, (because, believe me, I'd love to re-hash all of the gory details of how this all went down so that you could sigh and gasp in horror along with my story)  I will suffice to say that it has been a stressful week for me. 

I spent hours this week "building my case" as a lawyer might do in a court hearing, while my children spent entirely too much time watching Tinkerbell, Yo-Gabba Gabba, playing Ipad games, eating from the floor, and wearing wet clothes and soggy diapers.   I spent additional hours detailing my "case" in writing, because anyone who knows anything about the processes pertaining to special ed law knows that if it's not in writing, it didn't happen.  (Hmmm, if we used  this line of thinking in a court of law for criminal cases, imagine what kind of shape we'd be in as a country! Just sayin'.....)

Anyway, I had literally just said to my hubby the morning of said call how excited I was to get Mr. Nicholas into this program so that his time is spent wisely throughout the day, and so that perhaps I can indulge my younger two with mommy-type-attention in the way that it might go down in a "typical" household.  You know, play dates, shopping adventures, library readings, mall play lands, parks......instead of having my day chopped into little segments of getting their brother to and from school on time, and then to and from therapy on time. Sounds a little selfish maybe, but it's kind of a fantasy of mine if I'm being honest.  However,  not only could I spend this quality time with my youngest babies during these precious years of their lives, but I can feel good about it at the same time because I know that Nicholas is getting the interaction and interventions that he needs and deserves throughout the course of the day. And frankly, he enjoys them!  He loves the interaction in his own little smirky, smiley way! It's true! 

It is pretty evident to me that he loves mommy (blushing... yes, I am) but I'm not exactly the most exciting or enlightening person for him to spend his afternoons with.    Having him home with me all afternoon is a blessing  in some ways, but it is so incredibly difficult to give him adequate attention when the other two munchkins are so young, and still so needy. ("Mommy, I need a cracker! Mommy, I need Milk! Mommy, Brody is in the toilette...wahhhh whaaaa wahhhh!!!) 

Nicholas'  needs always seem to fall behind theirs, mainly because I have to guess what his are, or because I can't implement them (like therapy interventions) because of the constant needing/crying/diaper-changing activity required by my other two.  It's just where we are in life. I'm not complaining or looking for sympathy. It's just simply what it is.  Regardless, there is this constant cloud of mommy-guilt floating over my head each day waiting to open up over my newly washed hair for that very reason.   I was so relieved and elated that this would no longer be the case for us!!!  And then the phone rang.....

Days, meetings, phone calls, and angry emails later (by me, of course....I can only maintain my patience for so long) the "jury" has finally returned to the courtroom and has come to the conclusion, that YES, Nicholas is a good fit for their program....AGAIN!!   Hallelujah!

When I received the call this morning informing me of this news, I did not do a jig all throughout my house, or start exclaiming "praises to the Lord" or words of excitement as I thought I might when I lay awake each night this week anticipating  the decision.   I think, perhaps, I was a little shell-shocked and scared to let myself believe that it was true. (Once again, if I'm being honest, I still am until our IEP meeting is on the calendar and completed....but I'll try and keep the faith this time.... ) Instead, I hung up the phone, finished loading the few dirty dishes that were left in the sink, and then turned to look at my clean counter I had just wiped. And all of the sudden it hit me like a Mack truck into a brick wall.....and the tears began streaming down my cheeks.  So many emotions....joy, fear, sadness, excitement, hesitation,  gratefulness, and satisfaction, and others I can't explain...hit me all at the same time.  

Nicholas has been with this group of caring, loving, and supportive adults for (many of them) almost 3 years now.  They have taught him, fought for him, worked with him, cared for him, celebrated him, and I would even go so far as to say loved him, for all of this time.  For me, they have become my anchors in many ways.  There are very few people who know my son as well as  my immediate family members do, but these women are the only other people on this Earth who do.  And while having to leave them has been a reality in the back of my mind since the beginning of this process, it finally had it's moment to shine today.  

These women, aware or not, are so special to him and to me.  I consider us lucky to have had our family, and in particular, my Nicholas, be given the opportunity to know them, learn from them, and  most importantly, trust them.  They all do their jobs, but they do so much more, and for so little recognition. Not only for my Nicholas, but for others.  When I was pregnant and on bed-rest with my youngest, they all banded together and decided to make meals for my family so that we didn't have to worry about cooking. Despite all they have on their plates already with having child after child to attend to on their case-loads, and family after family to try and support who may be even more in need than mine, and so few hours in which to do so,  they STILL thought of us at that moment.   This was so touching and heart-warming to me, and I only hoped that I might be able to return the favor in some way some day. I still hope that I can....

I am lucky to have known them, and hope to continue relationships with them as our school years progress.  I may never be able to put into words what their involvement in our lives has meant for my family, but we are certainly all better for having known them all, especially Nicholas.  I know he will miss them, even though he won't be able to tell me or them....not yet anyway. But when he can, you can bet I'll make sure they hear about it!!!

As for moving forward, I am excited, and hopeful.  I am cautiously optimistic, and while I have mixed emotions about the situation because of the relationships that we have grown along the way, I have no doubt in my mind that this will be a more appropriate classroom setting for him.  He will be provided opportunities that just aren't possible in his current environment, and I can only hope and pray that he will begin to blossom in his own way. 

I am not expecting perfection, as I'm sure this new environment will also come with it's own set of challenges, and possibly even disappointments. However, I will sleep better each and every night knowing that I have done everything in my power to ensure that he gets what he needs and deserves, and that he will benefit from all of the time and effort that not only myself, but his educators have put into this decision as well.  

To those who have been on Nicholas' team along the way (and you know who you are) I am eternally grateful.  You will always hold a a piece of our hearts, and have placed a piece of our puzzle. Much love to you all!!

Pre-School Purgatory

Change is upon us.   Nicholas has been excelling at his ABA program since this past June.  It pains me to say that we will no longer be able to continue this therapy.  We began this summer, just after the diagnosis was made, with the knowledge that legislation was being passed in the state of Michigan in October requiring insurance companies to cover this type of therapy for those with an Autism diagnosis.  Of course, nothing is ever simple, especially when it comes to insurance coverage. We did not expect simple, or even quick, but we did expect follow through.

It has now been four months, and things are still not ironed out.  Our annual deductible has started fresh again, so even if these insurance issues are resolved soon, we will still be footing the bill for more than we can handle after paying out of pocket for the past 8 months.  (OH, so THAT'S what 'they' were talking about when 'they' said Autism families often go broke and/or remortgage houses to pay for therapies and medical expenses....I could never understand how this was possible. Now I do.)

At any rate, we have been forced to make a decision, and a very tough one at that. ABA is no longer part of our routine. We are done for now.  However, as I explained in IEPhew! Part III, Nicholas is being referred to, and considered for an ASD-specific classroom in another school district.  This process is well underway, and the second observation by the new district occurred last week. Following this, a meeting was held (privately) to discuss the feedback of the receiving school district.  (to date, I still have no details about what this feedback was...) The fact that a second observation  even occurred gives me hope that this decision might go in the direction that I'd hoped, but even if it does, there are some downsides to consider.  While the program is a full day program (which is one of the main reasons I pushed for this) the methods used in the room are not the same as ABA. Some may be similar, but they are not the "tried and true."   Now, I don't believe that any child only learns with one method of teaching, but it's scary (and guilt-provoking) for me to walk away from a teaching/therapy style that has worked so well for Nicholas in recent history. I've said many times, that in all of his interventions that he's been through in his short lifetime, I have not even seen a FRACTION of the progress that he's made in his only 8 months of ABA.   If I commit to this classroom, there is no time for him to return to ABA if it turns out that this new place does not measure up to my expectations, or his learning style. It's a big gamble.  I don't like gambling.

On the flip side, ANYTHING is better than the situation we have going on now, and I have actually since  been in contact with a parent who knows this "potential future classroom" very well, and speaks very highly of it, so I feel that it is now much less of a gamble at least than when we started this process.   Unfortunately, in the meantime,  I can feel the clock ticking (slowly) and my anticipation growing every single day that this decision will be made soon, because now I am witnessing Nicholas' gradual regression with each passing moment....because he is home with me.  All. Afternoon.  On his Ipad. From which I CANNOT separate him.  With his hands constantly in his mouth, and his constant need to stim. While I change diapers, clean messes, wipe faces, calm crying, and try to run a household with three children under age 5. 

It's not good people, it's not good at all.

As much as my intentions are there, I am not a therapist, nor do I have the resources to allow me to even TRY and be a therapist (and by "resources" I mean having sixteen arms, a minimum of three bodies, at least two sets of voices, and a boatload of patience)  Further, it is very clear that I am doing my son an incredible injustice by having him here with me (you know, just his good 'ole Mommy who supposedly knows more than anyone about his needs) all afternoon while I am unable to deliver the interventions that he so much requires in order to stay on track.  It kills me every day to witness and be responsible for this fact.   I actually only recently realized, that this is the very first time in his life that he has not been enrolled in some type of what I will call "extracurricular activity" (a.k.a. Therapy) since before beginning school.  We are now officially off the map....flying through the clouds....lost at sea..... and I have no idea how to do this!  Our life has never been this unstructured!

In the past two weeks since his ABA therapy has ended, we have been surviving  a major adjustment period.  My general day (in my recent past life) consisted of running to and from the gym in the morning, (sans no sick children) and to and from therapy twice a day in the afternoon, all the while juggling anywhere from 2-3 toddlers in the process.  Squeeze in a few mealtimes, bus stop responsibilities, random doctors appointments, meetings with schools, diaper changes, and play time, and this makes for a pretty full and complete day, albeit chaotic.

NOW, (Post-ABA) my day looks  more similar to what I can only assume a "typical" SAHM's day looks like....yes, I'm going out on a limb and making an assumption....you know what they say about those....  Anyway,  my mornings are pretty much the same as they have been all school year, with the chaotic 'breakfast-get Nicholas on the bus-get to and from the gym with the other kids-get home in time to meet the bus-then feed the kids lunch' routine.   However, normally, I am spending a good part of my early afternoon planning meals, snacks, filling milk cups and bottles, timing diaper changes,  and packing diaper bags to make the trips to and from therapy go as smoothly as possible so that somewhere in between our two trips up and down that familiar 3 mile stretch of road, the other two children take their mid-afternoon naps. This nap, is infinitely important to ANY parent who stays home with their young children... because even if for only 30 minutes, it means that we may have peace, quiet, and a few minutes of ME time if the stars and moon align properly and allow this to happen.    My attempt at perfecting our travel schedule timing to allow for this  is something of an engineering feat of miraculousness (yes, I made that word up just now) which requires precision and accuracy of epic proportions.  I have worked very diligently to master this art, and have nearly done so on many occasions!

However, there is no longer a  need for this scheduling miracle.  We no longer have anywhere to be, and nothing specific to do in the afternoons!  Perhaps now we could even squeeze in some play dates and trips to the mall!?!?!  Ahhh, what a sigh of relief!   But not so fast....while it is certainly a pleasant change, and much less stressful in many ways to be able to simply stay home with my children in the middle of the winter, every afternoon, I have now found a new level of stress to replace it.  The stress of not being able to address the needs of my autistic toddler. The stress of watching him slip slowly back into his world of  isolation, fed by his IPad games and television shows, of which I am guilty of allowing out of sheer necessity when I am managing three little ones on my own. (Believe me, it is not as simple as just taking these things away...if you have an autistic child, I don't need to explain to you the ramifications of this....if you don't, well, just come by my house one day and I'll show you what happens...)   The stress of my inability to engage him in the ways that have been successful in our recent past.  The stress of not knowing what our next move will be, or even WHEN our next move will be.... the stress of what I keep thinking of as 'Pre-School Purgatory.'

Yes, indeed, change (and hopefully for the better) is coming for us, and our current situation is only temporary.  But a lot is riding on what happens in the next few weeks, and if things do not go our way, yet another set of decisions will have to be made regarding therapies, schools, and future plans for my little man and for our family as a whole. I haven't a clue how long it will take to finally reach a decision and move forward, but I can only hope that we don't have to start from square one when that time comes.

Between now and then, I suppose I should just try and sit back, relax, and enjoy the new found flexibility in our schedule.  But that is hard to do when you know it is at the expense of one of your children.  Then again, perhaps I shouldn't fret after all, since it is possibly a gain for my other two....see how mentally complicated this gets?

Anyway, in the mean time, I will hope and pray for the best, and try to make the most of our new routine.  Maybe now I can actually make some dinners, or play games and do some crafts with my 2 year old, or sit and read a book to my 1 year old, or schedule play dates with my friends' kids, or visit grandparents.  Whatever the case, I know that purgatory isn't forever, and I will try and find a way to savor it.

Until next time....

From Me to You....Liebster Award!

Thank you to PDD World, my new blogging friend, for nominating me for this award!  I started blogging more for my own theraputic reasons than anything, and as it evolved, I felt that perhaps this would be a way to help others along the way. (Since, after all, blogs were and still are a place of comfort and identification for me.) And that has become my mission...to get my message out and hopefully help at least one other person out there.  Thanks to this award, and to my readers (both old and new) I have been able to get my message out there, and at least make a small statement in this world.  So without further adieu, here's what it's all about....

This award is given to new or up and coming bloggers who have less than 200 followers. The award is then passed along to other bloggers in the same category to help spread the word and support each other.

1. Each blogger should post 11 random facts about themselves.

2. Answer the questions the tagger has set for you, then create 11 new questions for the bloggers you pass the award to.

3. Choose 11 new bloggers (or with less than 200 followers) to pass the award to and link them in your post.

4. Go to their page and tell them about the award.

5. No tag backs.


Let's begin!

11 RANDOM FACTS ABOUT Uncharted Territory:

1. I am a technology-a-holic....I love gadgets, computers, and software that makes my life easier.  But I AM able to turn it off from time to time....and am making a conscious effort to do that more often. 

2. I do not keep potato chips or chocolate chip cookies in my house. These are two foods that I CANNOT stop myself from eating if they are available....IN EXCESS!

3. My husband proposed to me at the top of the Arc d'Triumph in Paris....yes, sickeningly romantic, I know!  :-)

4.  I can blow bubbles off of my tongue....you know, the saliva kind? (ewwww, I know!)  I used to do this in the volleyball huddle in college, and used to get in trouble for this by my coach.  

5. To clarify number 4, I played volleyball in college, and for many years after.  I am now too broken from injuries and child bearing that I will now have to take up a new sport that is less physically trying....perhaps underwater basket weaving?

6. I once ran a half marathon, and on a seperate occasion  rode my bike 100 miles in 2 days.  This was a VERY long time ago....clearly!

7. I prefer listening to music over watching television.

8. My first ever job was corn detasseling (Google it if you really want to know)...I HAD to throw that one in...it always makes people laugh when I tell them this. 

9. I am a HUGE Neil Diamond fan. I know just about every song he's ever written/sung, and have seen him in concert twice. 

10.  I have a new-found love of all things that sparkle. This from a girl who was no-frills for most of my life.  Maybe it's having a little girl that is bringing it out in me.

11. I love to cook, and look forward to spending lots of time in the kitchen with my little ones, but not until they are old enough to help me clean up!

Here are the questions from PDDWorld with my answers:

1) What are three things you CAN NOT live without?   Tweezers, Mc Donald's Diet Coke, and my kids. :-)

2) When was the last time you cried? Hmm, today....I cry all of the time, both for good and bad reasons. I wear it on my sleeve, and that's just the way it is. 

3)  Do you secretly have a favorite kid? Maybe, but if I told you, I'd have to kill you!  :-)

4)  Bath or shower?  Shower for sure. The idea of a bath is nice, but actually taking a bath grosses me out for some reason. 

5) If you saw somebody shoplifting, would you say something or pretend you didn't see anything?  Good one!  I'm not sure...I would probably say something, but if the person looked super down and out, I might just approach them and offer to buy it for them.  

6) Do you have a favorite picture of yourself? Where and when was it taken? Not that I can think of, but if I did, it would not have been taken in the last 5 years!  Darn that baby weight!

7) Do you have any pets? One cat...she's been with me for 10 years.  I smuggled her across the border from Canada to detroit in a duffle bag after finding her on a volleyball court in Windsor.  

8) What song is stuck in your head? Yo Gabba Gabba's "The first day of school, the first day of school, the first day of school, the first day of school!!"  Ugh!  For three days now!

9) Have you ever been arrested? Nada

10) Do you think you're a good judge of a person's character? Usually, but sometimes I'm fooled.

11) When was the last time you laughed til your face hurt? Sadly, I can't remember.  Need to make that happen soon!

QUESTIONS FROM ME TO MY NOMINEES:

1. Were you a regular blog reader before you began blogging yourself?

2. Where is the farthest place you have ever traveled?

3. If you could change one personality trait about yourself, what would it be?

4. Old fashioned book, or Ebooks? 

5. What is your favorite thing to do when you have a moment to yourself at home?

6. What was your childhood (or current) Nickname?

7. Do you have any strange or unusual phobias?

8. What type of vacation do you prefer, relaxing on a beach somewhere, or something more adventurous like hiking up a mountain?

9. What is your biggest pet peave?


10.  If you won a million dollars playing the lottery, what would you do with the money?

11. If you could meet any person in the world (current or historical figure) who would it be?

And now here are MY PICKS for the Liebster Award- Please check them out! .....Also, I am so new that I don't even know of 11 blogs that are so new that they don't have 250 followers, so I researched a few that I PLAN to check out....otherwise, this is going to take me WEEKS to pass this on!

1. http://www.caffeinatedautismmom.com/
2. http://www.imjustthatway.com/
3. http://blogginglily.blogspot.com/
4. http://minikitkatgirl.blogspot.com/
5. http://www.drawingroads.com/index.html
6. http://autism--tearsofaclown.blogspot.com/
7. http://myfamilysexperiencewithautism.blogspot.com/
8. http://pambyrne.blogspot.com/
9. http://www.skinnyscoop.com/listitem/49203/26689/cgregoryrun
10. http://www.confessionsofanaspergersmom.blogspot.com/
11. http://claireandpuppy.blogspot.com/

The Language Barrier

I want to talk about what it's like to have a non-verbal toddler.  I've touched on this before, many times, but I want to talk specifically and solely about this.  And lately, I've gotten a lot more "likes" on my blog's FB page by those who are in the autism community (for which I am grateful, because this is when I feel the feedback will really start coming....for better or for worse!)  and so I'd like to share my experience with this to see if anyone else out there has some insight, hopeful stories, or just plain perspective.  

Unlike many other young autistic children, my son has not yet uttered a single word. Some parents have experiences where their children hit each of their milestones, including speaking, and then watch them drift away at around 18 months of age. This seems to be pretty "typical" when I hear parent's tell their autistic child's story. I have never been able to relate to this.   Jacqueline Laurita, of Real Housewives of New Jersey, fairly recently went public about her son's autism. When I first heard this news, I was watching the reunion show (of which I have admitted many times, I have an unhealthy addiction) and she was having a very emotional discussion about this fact.  Of course, I cry at just about everything these days, but when the audio recording of her young son's voice ended a beautiful  montage of him in which he uttered the words, "I love you" to her, I began to sob.  I felt so incredibly sad for her to have had that moment with him, and then to have watched  it slip away into the 'abyss of language' that is Autism. How could she have known that this may have been the last time she would hear these words from him for a very long time?  (I choose not to say ever again, because I always believe that these kids can find their voice again!)  I could not get over how heartbreaking that must have been for her. I still cry when I think about that. Not just for her, but for every single parent who has that faint memory of their child's sweet voice remaining in their head, and now just looks into their distant eyes each day and no words are exchanged.   I've heard this story over and over from parents whose kids have "lost language" at some point, but to actually hear that little voice so clearly, and to know that it just suddenly disappeared, really was a heart wrenching thought for me.

Oddly enough, some may think that scenario is less heart wrenching than the fact that I have NEVER heard my son utter even a single word.  At about a year old, we got a few "ba ba ba's" out of him, and  even have a "dada" on film at one point, but it never moved past that.  And for this reason, I guess I never really could pinpoint when even the syllables stopped.  Nicholas communicates basically through a series of high pitched whines.  It has been this way for so long, that I just know how to read them, and they don't even sound odd to me anymore. (I'm only aware of them when we are in public somewhere, and I begin getting the stares....) When he's excited, they are accompanied by smiles, and when he is unhappy, they are more distinctive and frustrated sounding.  He does not cry, and has never shed tears.  He only whines.  Well, and laughs, of course!  :-)

When he was younger (pre-diagnosis,) I kept thinking that the language piece would come eventually.  But when therapists started focusing on using alternate communication devices to help him communicate his basic needs (like PECS and the IPad) I started to lose a little hope.  I'm just being honest.  As a parent who is new to the Autism game, but also one who has heard numerous "professionals" say that  "if they don't speak by age 6, it likely won't ever happen," it just lets a little air out of my tires each day that we inch towards his alleged "cut-off" age with no progress in his verbal communication.  For us, this area has been 100% stagnant since beginning speech when he was a year old.  Now, don't mistake...this is not to say that he doesn't communicate at all.  He lets me know now (thanks to ABA) via sign language that he wants milk or his Ipad, but for now, we are limited to basically these two things.  He does not often initiate communication, even if he's hungry. I could ask him 300 times if he wants to eat, and he will not respond in any way.  One could then easily assume that he is not hungry, but when I proceed to bring his food to his table as I do every single day, he will undoubtedly eat the entire bowl and THEN some of whatever is on my menu for that meal.  I may ask him if he's thirsty, and he will not respond with any signals, but eventually I will give him his bottle (because yes, we are working on using a straw but making very slow progress at this) and he will drink the entire 8 ounces in a matter of minutes.

So what is it like to have a non-verbal toddler???  It is scary.  I don't know if he's had a good or bad day at school, if he enjoys the school bus that I send him on every day begrudgingly but out of necessity, if he actually likes the food I make for him or if he just eats it because he's starving, if' he's waking up in the middle of the night because there is a monster under his bed, or because he has a stomach ache.   I mean,  these just are the basics.  But there there are other things I think about.  Do I annoy him when I constantly repeat myself to him just to "make conversation?" What is his favorite color? What things interest him, outside of spelling? (Ironic that one who has not yet found verbal language  is so very gifted and interested in phonics, isnt' it?!) What does he REALLY want to do right now when we have 30 minutes to play? Would he ask to go to the play land at the mall if he could? Or is he really just content sitting here playing on his Ipad like he does every day?  He doesn't initiate much, and he always waits for me to direct him, so I don't know if he feels like he's not SUPPOSED to do anything until prompted, or if he's just truly fine how he is.  Is he ever sad? Does he feel upset when he has to change therapists, or schools?   Does he feel anger?  Does he feel left out when his brother and sister demand more of my time, while he sits contently watching Yo Gabba Gabba?  Does know what love means?  Does he feel love? Does he feel MY love?

I often talk to him and ask him about his day, and try to guess what he would say back to me.  I always try to engage him in "conversation" because I know that he understands every single word that I say, and I'm sure he likes to have my direct attention (even though he doesn't seek it out.)  I know this because of people like Carly Fleischmann, who is a brilliant young woman living with Autism, who has found her voice through typing.  Because of her ability to communicate her insight as an autistic person, I have become aware, almost to a fault, that Nicholas has feelings and emotions that he can't express, and that at some point down the road (whether verbally or by other means) he may tell me that I irritated the hell out of him!  I think about this more often than you'd think. Because of the many Autistic adults who have been able to express that they have thoughts and emotions just like the rest of us, I have educated myself on this and make sure that I acknowledge this to Nicholas.   However, sometimes I feel that because Nicholas is only four, I have no frame of reference as to what he understands, thinks and feels....not only because he's autistic, but because he's FOUR, and I have no idea what other four year olds think about, talk about, and understand.  It's like a double whammy of ignorance for me.

 And the fact of the matter is that it is very difficult to talk to someone who doesn't talk back.  Now, I'm not suggesting that this is at all the same thing (and I also hope this does not offend anyone in any way) but is the best example that I can think of when trying to explain this to someone who has not ever dealt with a non-verbal child.

Think about visiting a loved-one in the hospital who has just fallen into a coma.  You come in, sit down, tell them how you feel about them, and talk as much as you can to them during your visit until you run out of things to say. You tell them positive things, funny things, or just whatever is on your mind in that moment.  You do this because you know that they can hear you, you know they want you there, and you know it is important.  But imagine that this person remains this way for months and months....years even.   And you continue to visit this person each and every day. It becomes harder and harder to find things to talk about, because they are not able to show their interest in your subject matter, and you don't have anything new and exciting to share with them. You can ask them questions, but they can't respond.  So, you continue to tell them how you feel about them, that you love them, and try your best to keep up the one sided conversation each time you visit,  but it becomes more and more difficult as time passes.

Sometimes this is how I feel with Nicholas.  It is different from the scenario above, because of course he can respond to me in SOME ways.    I am thankful every day that I can have hugs and kisses from him (though I don't know if he understands why I ask him for a kiss...)  and he can smile if he thinks something I say is funny.  But from a conversational standpoint, it is just hard to know what to say, how much to say, and when I'm not saying enough.  I don't know if that makes any sense, but I often struggle with this.  I feel that I neglect him "verbally" sometimes because his younger siblings are always asking (or crying) for something, and with Nicholas, it's the opposite....I need to always remember to ask HIM if he needs something.  He is quiet, and sometimes I think his needs are not met as quickly as they should be as a result.

Aside from all of this, I just wonder if he's truly a happy little boy inside.  I wonder if he has interests other than what he outwardly shows through his Ipad and blocks.  I wonder if he wishes that I talked to him more, or if he wishes I'd leave him alone sometimes.  I wonder......I wonder a LOT of things.
We do share our "moments" together, and we have unspoken communication.  Sometimes, instead of talking, I just choose to "be" with him....sitting next to him while he does what he loves (plays word games on his beloved tablet.)  But sometimes, I wonder if that's okay, and if that is enough. These are the times I keep wondering where that rule book is....anyone? Anyone????

So to you autism parents reading this who have experienced this with your kids, I'd love to hear from you.  How do you talk to your kids? What do you say? How do you feel about it?  Also, I should qualify my earlier statement about the verbal 'cut-off" age of 6....I know this not to be true, and I'd love to hear your stories that disprove this horrible theory that is doled out by every professional that I've asked.  Every time I hear about a child who began speaking at age 8, 9, 10, or even 17, it gives me hope that one day I will know my little man's inner thoughts, and who he really is.

After all, that is all I really want.....

The New Year and The Old Me

So it's my first post of the New Year.  Every year feels like a fresh start to me, but this year feels a little different.  For the past four years (with a small break in between,)  our family has been in a constant state of evolution.  I haven't had a chance to catch my breath from three back to back pregnancies, three new babies,  and a couple of unexpected surgeries thrown in there.  Every time I have felt like we would finally start to get into a groove, some major life change occurred (namely, more children!)  It has been a wild, wild ride, and in the end I feel so very blessed to have all three of these little people around me.  At the same time, it has been a difficult four years of trying to manage with babies so close in age, unexpected health and pregnancy issues, autism stuff, and what felt like a complete loss of control of my life in general.  Every nook and cranny of my house went to shambles, I wasn't able to keep up with most projects that I started or wanted to start (this includes showers, because let's face it, with three little kids, this IS a project), and just basic communication with people outside of my immediate family was all but lost.  It has just been an enormous amount of work to keep up with, and somewhere along the way I lost a big part of myself. 

Last night, while browsing through last year's photos, I was shocked to see that it was only this time last year when Nicholas started spelling with his blocks.   And this time last year, Avery was not even talking yet.  And this time last year, Brody was a mere 1 week old who was waking every 2-3 hours to eat.   It seems so long ago to me already, because all three of them have developed so much in this past year, and SO quickly!  I have not been accustomed to how rapidly young children grow and change, because with Nicholas, everything has just taken eons longer than with my neuro-typical children.  However, THIS year, with the help of his teachers/therapists, and with the tremendous amount of work that he has done in his new-found ABA therapy, I actually can say, and truly feel for the first time that he has made enormous (and tangible) gains compared to where we were at this time in 2012.  He has begun to follow many simple directions, sign for a few key items, attempt to do stairs on his own, climb into the van and into his car seat, use a spoon to eat his own food, and just in the past two weeks, has even begun to potty train!!  Just writing all of that out amazes me, and I'm sure there are lots of other little things (oh yeah, like sleeping in a toddler bed) that I forgot to mention! He is truly gaining some long-sought-after (by me, and probably by him) independence that at times I can honestly say I wasn't sure would ever happen until much, much later. 

And little Avery....she is growing like a weed!  She has begun talking in sentences, pretend playing, helping me fetch things around the house, cleaning up her toys (ok, not very often or well, but she is trying!) and even she is taking an interest in potty training!  She is so sweet, loves to cuddle with me, play any kind of game I propose, and the best part is that she tells me, "I 'yuv' you mommy!"  all of the time.  Do you know how long I've waited to hear those words???? It melts my heart every time, and I will never, ever get tired of hearing it!  She made my YEAR with that little addition to her vocabulary!

Oh and then there's Brody....my crazy, sensitive, silly Brody.  He has been such a blessing to have, and every day that he smiles at me, I think of how lucky I am that he's here on this earth with us.  Despite the fact that his first year was a little tough as far as the sleeping goes, and for me, a little anxiety-filled because I have been so on edge about whether or not he will have fallen on the spectrum at some point, (because I can't help it....statistics are a scary thing....) I think we have finally turned a corner.  The little booger decided to make me sweat it a bit by not babbling for quite some time, but he's finally begun to babble up a storm at me daily.  He laughs, giggles, tries to imitate me, "brushes his hair" with the brush, and just in the past month, he has begun walking!  He's my little bruiser who loves to climb all over furniture, and dive head first off of it.  He's already had a giant bruise on his cheek, and a bloody nose along the way, so I can only guess what's in store for me as he grows older and more "boy-ish!"  (though Avery actually lost a front tooth this year due to a little slip and fall accident in the kitchen, so I'm sure our future of injuries has less to do with being a boy than I would like to think) :-)

All of this to say that I have had a blast this past year watching all three of my kids grow in their own ways, and into their own stages.  Along the way, I've been exasperated from time to time, exhausted many times, but totally in love all of the time.  

This year, I look forward to (hopefully) "settling in" a little more as a family, and trying to find at least a little part of the old ME again.  I focus all of my time and energy on the kids, of which I'd have no other way at their ages obviously, but I think this year will be a little easier to spend even just a teeny, tiny fraction more time focusing on me.   Brody is finally sleeping at night (I say that with a slight trace of hesitancy in my voice, as this is VERY new, and I'm not entirely convinced...)  Avery is  at that super-fun age, and also quite a bit more independent than I knew a two year old could be, and Nicholas is going to do some BIG things this year....I know it!  I'm starting this year in a positive frame of mind, and my goal (because I don't make resolutions) is to focus on getting life back in order.  I've already started this process, when it comes to the house, cleaning, organizing, etc. (because holy cow can you accumulate a lot of crap when you have three kids in four years!) But I also want to regain some order when it comes to me!  I need to pay more attention to myself this year, find/make time to shower, paint my nails, read a book, and exercise regularly. Doing my hair is pushing it, but I could always slap on a little make-up at least!  I need to make my own doctors appointments that I always put off because my kids' appointments always come first.  I need to talk to my friends from time to time, even if this means hiding in a closet somewhere so I can hear what they are trying to say!  I need to clear out the clutter in my life, so that I can breathe again. This will be my journey and focus this year, and I hope yours is the 2013 that you hope it will be!  Happy New Year everyone! 

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.....