Forced Organization

Those that know me well know that I am not an organized person.  I always have a general idea of where things are, but I am definitely not a 'a place for everything, and everything in it's place" type of person, but I'm trying...well, actually, it's more of a forced organization.

This coming week, I meet with the school district to develop J's IEP (individualized education plan).  This is essentially an educational plan for special needs students, it involves writing goals, identifying areas that need help, and determining what services the school district will provide in terms of speech, occupational therapy, etc.  I hear from most people that these are not generally pleasant meetings, as both sides have ideas of what they would like for the IEP to look like, and you get to sit there and hear all about the deficits your child has, how severe (or not) they are, and how that will/will not effect their education. 

The irony of this is...this is preschool, PRESCHOOL!  Anywho, I was reading the letter from the district regarding what I need to register him and I freaked because I knew I had not thrown them away, but I could not find the minutes from the school eligibility meeting.   Long story short, I found them in the folder with all the pool company info (see, I told you I had them somewhere!) and decided that I needed to get organized.  Soooo, we trekked to Target and bought this and a case of Bud Light Lime. 

I was hoping for something a bit more blingy or tacky, since I figured that I will probably get some strange looks when I go to talk to the preschool teacher with this in my hand.   But I guess standard, boring black and grey will have to do.  I picked up a pack of dividers and K thought I should get 2 packs "just to be on the safe side."  What?  24 tabbed folders...I hope I'm not making that many folders for J, but who doesn't love office/school supplies, so 2 it was.  (For the record, I only needed one, but I'm saving this for something else and keeping my fingers crossed that J2 won't ever need a box like this.).  So, here's the super sneak peak inside:

There you have it...therapies, insurance, contacts, school system, IEPs, medical referrals, general info...I think it might even have a bit of space for a flask (just kidding...I know that's not allowed at school and I would prefer CPS did not show up at my door.).

Wish me luck with the school district, and please pray that J's preschool teacher doesn't think I'm too much of a nutter.  I'll update later in the week with how it went.  Now that this is done, the rest of the day will be spent building things, painting things, cooking, and enjoying what's left of the weekend.

Sorry for the boring post, I just didn't want to disappoint all two of you who are reading this by not posting something over the weekend.  :)

An article on the Autism Speaks Website that I would like to share with all of you:

Why Awareness Matters 

Tuesday, April 24, 2012 Autism Speaks

Phillip Hain is the West Region Director of Autism Speaks and the parent of a child with autism
April 2, 2012 marked the 5th annual World Autism Awareness Day..
I specifically said “marked” because past experience has shown that using the words “celebrated,” “commemorated,” or even “observed” would potentially stir up an entirely different set of issues. I’ve seen some parents write that autism should be celebrated because many of our kids have extraordinary gifts and talents. Then along comes another parent reminding everyone (as if we don’t already know) that other kids are non verbal, self-injurious, and medically sick so there is absolutely nothing to celebrate about autism.

And even something that seems benign about the basic need to continue raising awareness brings criticism. Parents lament that they are overwhelmed by autism and overloaded with awareness. The subtext is that we live it every day so we don’t need more awareness. I read somewhere that April should be renamed Autism Action Month, with the complaint that awareness wasn’t enough. I agree that awareness isn’t enough, but no one ever said that awareness is where we should stop. Quite the opposite—awareness is the beginning and leads to action. But if people don’t know or care about an issue, why would they do anything about it? Awareness is not reminding ourselves but carrying the message outside our sometimes protected circle and educating those not affected by autism.
For everyone who thinks that there’s enough awareness and an abundance of compassion, I ask you to read this letter. The cowardly author(s) addressed the envelope in crayon to avoid identifying themselves and sent it directly to one family’s home.

The parents have now had to involve school officials and the local police. Rather than backing down or being intimidated, the response was, “They picked the wrong mama bear to mess with.” This mom then decided to do something and run in one of Autism Speaks’ Team Up events to help raise money and awareness so that other families will not have to endure this type of bullying. Talk about awareness leading to action!

Earlier this year Autism Speaks awarded a Family Service Community Grant to an organization which helps children with autism who are bullied and harassed. Many people don’t realize that children affected with an autism spectrum disorder are the victims of abuse at a rate of up to 12 times higher than their peers without autism. I don’t think it’s a stretch to believe that some kids who bully other kids affected by autism might possibly learn this type of behavior from parents who are intolerant. One example is the letter you just read.

Last month I met a young man with Asperger Syndrome who goes around his community in Northern California and speaks to schools and other community groups about his experience living with autism. He doesn’t see autism as a negative but simply part of who he is. Of course it presents challenges but he deals with them in a manner that works for him.

I have an adult son with Asperger Syndrome so these issues are very real for me. In middle school he was the target of another student who took advantage of his kind disposition. Andrew is now enrolled in community college, takes public transportation and navigates himself around our town independently. But that does not mean I’m not worried that he might say the wrong thing or get himself inadvertently in a situation where someone doesn’t understand him. I don’t think that feeling will ever go away.

My personal method of raising awareness every day is wearing my blue puzzle piece pin. Well-meaning but unknowing strangers often playfully ask me do I like puzzles, if I am puzzled or have I found the other puzzle pieces. I smile and tell them it’s a symbol of autism awareness, and this generally results in a broad smile and favorable response. I see this as a small sign of progress. Years ago when you said “autism” it was necessary to explain what it is and even then people looked a bit confused. Now, even if people don’t completely understand autism, at least they have heard of it. And with the new statistic of 1 in 88 children being affected, often they have a personal experience with it through a friend or relative.

On a recent trip while boarding a plane, the flight attendant noticed my pin and said, “I have a son with Asperger Syndrome,” which led to a brief chat during which we exchanged parental experiences. When she later came through the aisle I gave her my pin and she promptly placed it on her service apron. Now many thousands of travelers will be more aware.

No one should feel reluctant or apologetic about raising awareness.

Yesterday...at band camp.

Just kidding...it goes more like this: Yesterday, at social skills class, I must have completely left my brain at home.  It all started out with the morning coffee, I don't know why or how it happened, I guess I was just thinking of other things.  I filled my coffee filter with the contents of J2's can of formula.  In my defense, I caught this before I made the actual coffee, but I should have known at this point that this was a good indication of how the day would go.

These days are great, because class starts at 10:30, so we have some time to watch cartoons, get the kids appropriately dressed, and fed.  It was pretty cold in the house, so I again made the natural assumption that it was cold outside, I pulled out our coldER weather gear: hoodies, leggings, pants, and knock off baby uggs.  I usually wear flip flops, even in the winter when all else is covered up, so I was good there.  We walked outside and it was almost...hot.  No time to change, but due to my aforementioned issue with dressing ourselves, I've learned that layers work well.  Off came the hoodies, my cardy and baby uggs (fortunately I had some time to manicure baby J2's toes this past weekend).

We dropped J off and J2 and I headed to Joann's and Trader Joes.  I have several projects going right now that I better hurry up and finish before K starts to get really pissed about all of my clutter in the garage, I bought some fabric to start a new one (A ric-rack type skirt for J2), some upholstery tacking strips to finish up a chair for J2's room, and a rubber mallet to hit myself over the head with.  (Kidding, I'm pretty sure I need this for the tacking strips, if not, I just acquired a rubber mallet to add to the tool collection.  I'm sure we'll need it at some point.)  I wondered through the store past mostly old ladies, J2 snug in her bjorn, grabbed my spool of fabric and proceeded to have it fall out of my small basket along with the tacking strips about 5 times on my walk to the register.  It is not fun to try to bend down ad pick these things up with a baby strapped to your front.  I should have picked the cart...lessons learned.

J2 had a dirty diaper and since I didn't feel like heading back into the store, I opened the back hatch and changed her, and at this point I had to take her leggings off and she was down to the long sleeved onesie since I forgot to replace the extra clothes supply in the diaper bag..  I tried to decide whether to put her in the carrier or not and I'm pretty sure that I pushed the button to close the back hatch.

Went into TJ's and bought a case of 2 buck chuck, which is, BTW, now 3 buck chuck.  We're first class all the way, guys.  I walked outside and thought 'What an idiot, someone just left their back wide open."  Well, that idiot was me, my car was wide open the entire time I browsed through Trader Joes.  Good thing no one stole my polka dot fabric and rubber mallet!  I swear, I pushed that button, so I'm just going to blame it on an electrical malfunction.

K called and we decided to meet up for lunch at the NEX, I picked up J and headed over.  We grabbed some food and sat down, things were going well at this point.  No squirming, everyone was eating like they were supposed to, and we had the iPhone calculator nearby just in case.  J got a lid cup of water with his meal, and he's usually really good about drinking from these...not today, he dropped the entire cup on the floor, and for some reason, no one is giving napkins away freely in the food court.  Oh well, we did the best we could cleaning up and headed out.  The previous post...the Home Depot one, followed all of this after nap time.  The good news is that I didn't forget to pick anyone up yesterday, we had a 'nice' family lunch out, the pool guy finally called us back, and the kids napped for a long time.  This is a really out there day for us (or, um, me), but I guess it puts some 'adventure' into being a stay at home mom?  Like I said, I think I need a job. :)

When 'First, Then' doesn't Work....

Another phrase that you will hear in our house many (many!) times a day is 'first, then.'  It generally works phenomenally well with J.  He has several things that he LOVES, the current faves are hot wheels cars, raspberries, and any sort of candy (but this can work with anything that he is asking for).  Maybe I want him to sit with us at the table and eat his dinner.  He might want to sit at the table rolling his cars and avoid eating whatever vegetable is on his plate.  (Oddly enough, he will usually eat all the vegetables before touching mashed potatoes...I do sometimes wonder if this is really my child...really, no mashed potatoes).  It starts like this, J, take a bit of ______, no response.  One of us takes his car, J, 'first _____, then car.'  And sure enough, it works like a charm every time.  We gradually increase to J, eat 5 bites, 2 of whatever meat is on the plate, 2 of whatever veggie is on the plate, and 1 'no thank you' bite of the potatoes.  Maybe I want him to hug J2, or me, or K, it always works.  I have found that he has many skills we didn't think he had by using 'first, then.'  In general, if it isn't worth his while, he won't do it...not sure I blame the kid!

As an aside, it also works with husbands.  'First _______, then beer.'  'First_____, then ice cream.'  Ask K, he'll be honest, it's amazing.  I'm trying it on the pugs, but it's...um...slow going.  Try it sometime on your kids or spouse.

Today, it failed us.  J has started to do this vocal thing that I can only describe as a grunt (sometimes I don't think he even knows that he does it, so we just tend to ignore it), he's also started doing a high pitched shriek in public, in addition to yelling 'yucky poop' every time we walk in Home Depot.  I do not know why he does this, I can only surmise that he relates it to what we say to him to motivate potty training, but he has turned it on us, and laughs as he yells this.  It has become a game...an embarrassing one.  We tried 'first, then'...'first quiet voice, then fruit snacks.'

Wow, it worked...while he ate the fruit snacks.  He continued to do this throughout Home Depot (my apologies to anyone who witnessed this and thought we were just ignoring him for no reason), so we thought, well, maybe if we just ignore him he'll stop.  No attention usually = decrease in behavior...didn't work.  We also has another trick that works...numbers and letters, any and all.  So let's say he's started with his mischief, you can ask him to count just about anything...lights usually work well.  Or you can ask him what letters he sees.  Distraction is key, and this always works...even today.  J2 usually impatiently waits in her baby bjorn while munching on a mum-mum.  I'm pretty sure she thinks we are all bananas (and I'm pretty sure she just barely tolerates frilly & pink - love this girl- so much spunk!).  This is the little face I see staring up at me when she's had enough:

 



I'm not saying K and I weren't chomping at the bit to get out of there.  We hurried out, loaded up the kids, had 30 seconds of silence and then started laughing at the sheer ridiculousness of it all - these kids own us.  Memories..this is what they are made of.

Trickery

I was going through some pictures today and I saw an epic contrast.  I'll just keep this short and sweet, because a picture is worth a thousand words...

What you'll see on facebook...the lovely family photo.

And a behind the scenes look...the reality of parenthood.

I'm thinking this one's a framer for the dining room...a little quirkiness never hurts.

Happy Monday to all!

Great Weekend

Not much to report, we spent a beautiful Saturday letting J Donald-Duck it in the backyard in a feeble attempt at potty training. It was a bust, but we had a good time and a lot laughs, and we will try again.  Sunday, the weather was pretty gloomy, so we were responsible adults and cleaned the house, did laundry, and cooked a healthy/tasty dinner.  Just thought I would leave you all with a little ray of sunshine to make you smile on gloomy day.  J's 'What you talkin' about Willis?' face.

Unsolicited Advice

It's happened to us all (and we probably all do it/have done it)...you should do this, you should do that, if you did it that way it would work better.  This seems to start in childhood and continues on throughout life, but it really seems to ramp up once you get pregnant.  "You shouldn't be eating sushi!"  "Sandwiches carry bacteria, don't eat them!"  "You dyed your hair?!?"  "Wow, you're really big!" or on the converse (depending on who's saying it of course!)  "Wow, you're really small, I was that size at 6 months, are you sure your baby is growing ok?"  For the record, I did (and heard) all of these things, well, except for the sandwiches, because I like them heated and still eat them that way.  So you think it's bad when you're pregnant...wait until the kid is born!  The majority of the perpetrators seem to be in the grandparent and/or senior citizen category, and when they see a baby, they ALWAYS come up to talk to it, tell you about their grandkids, usually a nice little conversation that you may or may not be able to end quickly.  They automatically get a 5ish minute pass of saying whatever they would like to, while I politely smile, nod, & answer questions before trying to finish up whatever I'm attempting to do before a kid starts losing it.

But when I think of unsolicited advice in the special needs realm, this is our experience that comes to mind first.  Let me give a background: We were in a Bank of America trying to close a checking account of mine from college.  This account had something like $50 in it, but they wouldn't let me do it over the phone, so we schlepped ourselves to the bank branch.  I was pregnant with J2, J1 was in the stroller and we were in Coronado, where you walk out of your back door and it feels about 72 degree, but then you get down the street and it seems to be 50.  Needless to say, we were probably not dressed for the weather...this happens to us alot.  All of this to say that J1 was in a pair of cargo shorts, socks, and a short sleeve t-shirt.  It was right after he was diagnosed, so a little after age two.  We're standing there, minding our own business with J in cheapie umbrella stroller that we normally keep in the car.  As luck would have it, a little old lady walks in and stands in line behind us....and she looked like a talker.  We knew we were in trouble.

We used the 'ole 'no eye contact' trick...it did not work.  It started innocently enough, 'oh what a cute little boy...what's your name?'  J, of course, did not answer...and then the real fun started.  She commented on his shorts first, then somehow moved on to whether or not we were the type of parents to get a bounce house for his birthday party (of course not, not us!), because that was just a complete waste of money...yada, yada, yada.  We were nearing my five minute limit at this point and the line was not moving any faster.  She then asked him what he wanted for his birthday...no answer.  So then we made the big mistake.  Instead of just saying something like, 'Oh, he's just shy' and making our life easier, we explained that he had a speech delay.  This is where it all went down hill.

She explained that if they just made strollers where the child faced their parents (we have one), and kids' parents just talked to them more (we do, god, we do!), all of these speech delays wouldn't be an issue.  In all honesty, I could tell that K was starting to get pissed, and as usual, my natural reaction to when K starts to get pissed about something like this is to laugh.  So I did, and she kept talking.  K walked off with J and I just kept trying not to laugh, but as you probably know, you try not to laugh, it only gets worse.  She was still talking, something about parents using the schools to do their parenting work, I'm not really sure, I was trying to employ the ABA technique called extinction.  Ignore it and it will stop.  It did not work, ABA failed me that day.

We were called to the counter first, my account was closed quickly with minimal hassle, at least as little hassle as you would expect from Bank of America.  I was gathering my (of the irony...all of this for 50 bucks so that I wouldn't have to pay a fee every month) cash, she was called up, she grabbed a handful of the free suckers from a basket handed them to me, and told me 'you should take these, they are probably worth more than the interest you are earning on your account.'

Now, she was quite the spitfire, and I'm not sure if I should hope to be like her when I'm 80 or not...but I'm thinking not.  Sooooo, if you're ever waiting in line and someone walks away from you, the other person is laughing, and then they turn away and attempt to ignore what you are saying, just stop talking, because you have probably offended them.  Again, 5 minutes, I'll listen to just about anything, but after that, all bets are off.

No moral to this story, just something I was thinking about this morning as I was paying bills, thought I would share it with all of you, take what you will from it.

A Day in the Life

So what's it like to live with a child who has autism?  Well, the answer to that would depend on who you are asking.  Autism is a spectrum disorder, meaning that it can range from extremely severe to mild.  As stated in my prior post, J's diagnosis is PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and here is where things can get confusing.  PDD can be severe or mild, some consider it a "catch-all" diagnosis for kids that show some atypical behavior, and if you were to ask a psychologist or psychiatrist, they would probably tell you that it is a condition where the child does not meet all of the criteria to be diagnosed with Classic (Kanner's) Autism, but does meet enough for their development to be considered atypical.  All of this will be changing soon, though, as the DSM is said to be combining the three disorders under the umbrella of Autism Spectrum Disorders.   It looks like this on a graph:

J tends to function on the higher end of the spectrum, as his cognitive development is on target.  All of this to say, that if you ask someone who has a child that has mental retardation and/or severe autism, their day is going to look a lot different than ours.  There is a saying, "If you've met one person with Autism, you've met one person with Autism."  Each individual has different strengths and weaknesses and the goal is to build on those strengths in order to mitigate the weaknesses.

Minus the 3 hours of therapy daily, our day is probably very similar to yours.  We are generally woken by Midas (the black pug) whining and howling as soon as the sun is up and he hears the slightest bit of movement...usually around 6 or 6:30.  K and I both open our eyes and say 'I hate that dog.' (most of the time there is a curse word inserted in there).  This happens every.single.morning, and when it doesn't, I will not be the person that goes downstairs and opens the crate, because when it does happen, it will likely mean that Midas is no longer with us.  Knowing my luck, this will probably happen when K is deployed and I won't have a choice.

Aside from that, I roll out of bed, brush my teeth, and marvel at how rough I'm looking.  Our ABA therapist shows up at 8:30 and is here until 11:30, so I usually throw some baby powder in my hair, tease the shit out of it, throw it in a pony and if she's lucky, I put something other than pajama pants on.  On a really, really good day, she might see me with makeup...she doesn't judge :)   I'll eventually post some videos of ABA so you can see what it's like, but for J, it's play for the most part.  For kiddos like mine, 'play is work, and work is play.'  He doesn't mind learning all things tangible (his memory is amazing, so things like numbers, letters, shapes, and colors aren't an issue), but he doesn't know how to pretend play, or many times how to even play appropriately with toys, or how to interact with kids his age...we work on this.

Coffee is poured, J's breakfast is negotiated since he usually asks for something like salmon, 5 oreos, or fruit snacks...he usually ends up with some variation of toast and/or a banana.  Diapers are changed, babies are fed, and we head into the playroom.  This is it, it's the very front room of the house, if you looked in the front windows, this is what you would see.  When you walk in the door, this is what you see...it's my favorite room in the house and I'll be sad on the day that we have to grow up and convert it to an office.   The little desk and chairs are primarily where ABA takes place, so we spend a lot of time in here.

This is our morning routine Mon, Wed, Thur, Fri.  We get lucky on Tuesdays.  He goes to 'social skills' class for an hour and I drop him off there.  This is run by an occupational therapist and a speech therapist and they teach the kids turn taking, answering questions, fine motor skills, speech skills, etc.  J2 and I head to Starbux or the craft store, because I can always use supplies for some obscure project on pinterest that I will never get around to doing, and will inevitably end up going to Goodwill.  I have good intentions, just bad follow through. Tuesdays are low key and sometimes we even get to meet up with a playgroup.

Since J is now 3, we no longer qualify to go through Early Intervention, and since his birthday falls in April, he won't be starting school until August.  We are in the process of getting him enrolled in the developmental preschool program through the school district, and let's just say that we are cutting through some red tape at this point.  This is our first go round, so it kind of feels like we have no idea what we are doing.  This means he will be without his 1 hr of speech a week until August.  I don't really mind this because it's one less thing and I actually think the ABA does so much more than the speech did.  I might be missing something genius, but it seemed like the speech therapist always followed him around the house and enunciated what he was doing...J is 'jummmmp-iiiing.'  I really liked her, but I don't think it did much...now I just follow him around and enunciate.  I guess that's why he enjoys bonking us in the head with a pool noodle...but it's interaction and he loves it, so we play along and pretend to enjoy it as well!

We live a pretty typical life in the afternoons, we go outside and play, watch cartoons, hit up the park, etc.  The kids still nap, so that's pretty awesome for me.  The only minor blip is that J loves to look out the window in his room while he is supposed to be napping.  His window is in the front of the house, and this totally sells me out if, for instance, some Jehovah's Witnesses show up at the door and I pretend not to be home.

We are lucky that J doesn't currently exhibit too many behaviors and is generally a pretty mellow guy.  He does get easily overwhelmed in new situation and will withdraw and maybe stim (especially if there are any wheels in the vicinity).  He is also really sensitive when it comes to spilling things, accidently running into people and having to apologize, if something breaks/isn't working, or if someone is yelling (it doesn't even have to be at him, he thinks it is and takes it reeeeaaallly personally)...think of a younger Kevin from the Steve Martin movie 'Parenthood.'  He can also sometimes get really stuck on one thing...stairs, a certain slide, going back and forth over something, so we have to try to break that hyperfocus and help him learn to try different things.  We use the phrase 'No big deal' alot!  We are also really, really, really lucky that military insurance covers most of these therapies, as they have done a tremendous job of catching him up.  As with everything involving insurance, there are definitely hoops to jump through, but in the end it's worth it, because you can't beat the coverage.  Without it, ABA at the rate we are at would cost in the ballpark of $3600/month.  We currently get 12 hrs/week, recommended is somewhere in the range of 20 hrs/week, and original studies were done at 40 hrs/week.  This is why it's so, so important to try to push through legislation for coverage, as it can make such a huge difference for the kids.

When he was originally diagnosed, his language was assessed to be at a 6-9 month level, now, a little over 8 months later, he is almost up to age level.  If you were to try to have a conversation with him, you wouldn't be able to because his language is pretty much all scripted and/or labeling of objects/activities, but he is now able to engage and get his needs met, so we are moving in the right direction.

I don't intend for this entire blog to end up being about autism.  While it's a big part of our life, it isn't our entire life, but while it's still new, it want to give all of the background and basically answer the questions that many people have.

Lessons I've learned:

1.  The crockpot is my friend
2.  Technology makes most kids happy and I am not above turning on Nick Jr. for breaktime or handing over an iSomething if it's one of those days
3.  My house is messy most of the time and I don't mind...there are more important things
4.  Once the pugs depart, I will not get any more animals, but I will make the best of them while they are here.
5.  Tell your kids that they are smart...every chance you get, it makes a difference, a big one.  This is one of the first things that I noticed about the therapists at J's ABA center, they always tell the child how smart they are, no matter how big or small the task they have accomplished is.
6.  I love Dr. Seuss and his words still ring true:  Today you are you, that is truer than true, there is no one alive that is youer than you.
7.  There are a lot of things to be grateful for.
8.  I think I need a part-time job :)

Where We're Going and Where We've Been

Well, my beautiful little boy celebrated his third birthday this past weekend, and now, in this past hour of quiet while the kids are napping, I've had some time to reflect on where this past year has taken us.  I'm creating this blog for special needs parents and those that love and support them. 

Some of you reading this may be aware that it's Autism Awareness month and what most of you don't know (and what I haven't totally put out there yet,) but might have inferred is that my son has Autism.  There, I said it. How it all began is kind of a whirlwind, but I want to tell our story and I want people to know that if you are going through it, you are not alone.

Last year, at the age of two, J was not speaking, and by not speaking, I mean that he wasn't really even able to say 'mom' or 'dad.'  As he was developing from about 15 months on, I noticed some differences in him, and looking back, I notice even clearer things, even earlier, but it wasn't anything that set off the alarms, just more of a 'well, that's peculiar.'  I was reassured by pediatricians, until about 20 months when they finally gave me the referral to speech therapy and early intervention.  Our speech therapist (with an autism interest) noticed a few subtle things that I didn't even notice and suggested we have him evaluated for autism.  What???  My sweet little boy....great eater, great sleeper, totally mellow and charming, he couldn't have autism, no way, no how.  We waited two months for that appointment.

In June, I was eight months pregnant with J2.  We sat in a room with the child pscyhologist for three hours while she observed J's skills, his play, his eye contact, his interactions.  I won't ever forget sitting in those chairs, my boy on my lap, doing some thing where he was intently observing a raisin in front of his face instead of eating it like he was supposed to.  J was diagnosed with PDD-NOS, essentially atypical autism.  She recommended 20 hours a week of ABA therapy, speech therapy, occupation therapy, and a children's playgroup.  One week later, the Regional Center was at our house, writing goals, setting up ABA therapy, giving me a hundred consent forms, and taking medical histories.

I did (and to an extent still do) have to educate and explain to family members that what J has is autism, and although he is not as severely affected as he could be, it is an impairment that will affect him for life.  I am ok with it, I have accepted it, and for the most part, I have a ton of support, but sometimes it is hard to help people see something for face value.  And sometimes it is even harder to hear a dismissive "J will be fine, you are being ridiculous."

Two weeks later, I had Juliana by planned c-section.

I was discharged from the hospital after 48 hours because I was doing well enough and wanted to normalize things as much as possible for Jake.  Within two weeks of being home, we started ABA therapy and...HE LOVED IT!  Juliana was small enough that she would sleep in her swing while we spent three hours with Jake in his room learning to make eye contact, to point, to sit, to request things....things typical kids just pick up without anyone having to sit down and teach them.  He loved to learn (and still does!) and it has been truly amazing to watch his confidence, along with his skills soar.

I don't think I ever had time to process it, so there were very few times that I felt sadness.  I'm a fixer, and well, I was/am determined to do whatever I can to make J the best he can be.  I remember feeling grateful for what I did have, a kid that could walk, smile, sit up, laugh...not everyone gets that.  We ask for and want to be moms, and we get what we get, but in the end we...get to be moms. I do remember being sad at the park, watching kids come up to him and he would just look through them, get stuck going over the drawbridge over and over again, only go down one slide over and over again...not saying a word or really even looking for us the entire time.  There are kids that ask us why he doesn't talk (he has other strengths and he's still working on it), or why he only likes to look at wheels roll instead of riding on things...I answer as best I can...I don't know, it's just what he likes.  I remember being sad when K was afraid that J would never throw a ball with him, should we set up a special needs trust, would he ever be independent, would he ever talk, would he be happy???

In August, we got orders to Corpus Christi, but the week before K was to go down to look for housing, they were yanked and we were told we would be sent to Virginia Beach were more services were available.  We had about a month and a half to find somewhere to live, determine how we ever going to get there, and figure out how to set up therapies on the other side of the US.  We moved in mid-October and things went fairly smoothly.

Holidays passed uneventfully and services were set up here, our pace picked back up, and J2 began to join in the fun.  Up to this point, I have only really talked about J1, but J2 is developing right on track and it is totally amazing to watch the differences in her development versus J1.  She is cute, funny, a drama queen, and completely and totally typical.  Neither is bad or good, they are just different.

I've been so changed on this journey that I've decided to change my career path and this fall, just finished my first class to become a BCaBA.  There are so many kids that aren't nearly as lucky as my little guy as far as availability of services go, and I want to help...for free.  I think every kid can be reached in some way and life can be better with the right help...I am living that proof.

As I look back, I remember my little boy's 2nd birthday where he didn't want to put his fingers in his cake and he spent most of his time slamming cabinets and doors until the hinges had to be tightened, preferring to roll his cars back and forth and watch the wheels spin rather than play with us.  One year later, I watched my guy blow out his birthday candle, wear his birthday hat, say 'Cheese' for the camera and tell himself Happy Birthday.  He knows his letters, numbers (completely obsessed with a phone calculator and any technology really), colors, and shapes...and he can throw a ball (and 'kind of' catch it) with his dad.  He still loves to roll his cars, but he would much rather get his hands on that cake.  I know he will have his challenges in life, but I CANNOT WAIT to see what he will become.  For today (and most days), Life is good and there is always hope.

Don't be afraid to ask questions, don't be afraid to teach your child that other children have different strengths and weaknesses, don't discourage your child from asking questions, don't be afraid to be friends, disabilities aren't contagious and you might learn something truly amazing about yourself and/or your child.