Extra Special Blog

Burning the candle at both ends, of course ;>

Being a working mom is no joke. I know it’s very tough to work outside of the home and leave your kids for most of the day, but in some ways, I envy you, because when you come home, you’re really “there”. When you work from home, your kids always seem irritated when you’re working, because you’re always accessible to them–so it feels more like neglect to them than a necessity. At least they know you’re at a job when you leave the house. It’s all a balancing act and something gotta give–unfortunately, I think what’s giving is me.

I’m going to keep this short, because it’s closing in on 2am and I still have to make Oscar’s lunch. I just had to pipe in, because I’m getting pissed off at how overextended I am and how when you try to do everything, you feel like a failure at everything! I can’t focus on work properly, so I work in a half-assed way, in drips and drabs throughout the day. I end up staying up very late, because it’s the only time the house is quiet and nobody wants anything from me. Then the next morning, I’m too exhausted to play with Ezra with the vigor he deserves. Also, I never exercise anymore (can’t say I “miss” it, but I really need to).

Do we have a choice though? How is it than men get to be great daddies and have fulfilling careers and generally don’t have to do as much around the house? I’m definitely coming back as a dude in my next life, because the expectations are so much higher for women. Weaker sex? In what universe?!

My husband is great, but I KNOW he would never be making lunch at 2am.

I had a mini-heart attack today.

All morning I had been trying to talk to Ezra, play with him, dance with him. The morning started off okay, when I read him a few books, then—POOF!

He just completely froze me out, preferring to focus on his cars and trains. I kept calling his name, asking if he was hungry, etc, but nothing got a response. I even tried my patented “Wan’t some ice cream?” technique, which usually breaks the spell, but it barely worked, as he just turned his head down and started singing an ice cream song when he realized I didn’t have any in my hands.

I even tried taking his blankie off of the couch, showing it to him and saying “This is my blankie!”, but it totally backfired on me, as he was standing on a play chair at the time and was so disturbed by this that he fell off! I felt horrible about the bad timing on that one.

When it was time for a nap, I rocked him in the chair and sang, as I always do. At one point, his eyes started blinking frantically. I had no idea if he was doing this on purpose or involuntary, but it scared the shit out of me, because I thought he was having a seizure. I’m not very religious, but I prayed hard at that moment, as he pulled my hand on to his eyes to help them stop blinking. I’m welling up just thinking about how scared I was at that moment.

The blinking eventually stopped and he fell asleep in my arms.

Oscar never had seizures (THANK GOD!) and I was told by the doctors that ASD kids can develop that symptom up to the age of five, and if they don’t, then they’re in the clear. I hope they’re right, because I can’t imagine the daily fear that parents with kids who have seizures have to live with. You all are way stronger than I am, for sure.

Yesterday, that spot where Ezra got his last vaccination was red and inflamed again. For those of you keeping track, this is the 4th time this has happened since he got the DtP shot in September 2010. I’m a firm believer in vaccines, and I don’t want my kids to get the mumps, but I can’t ignore that Ezra’s regression started after his shot and seem off-and-on to this day. I’m petrified to give him another shot, but I’m also petrified to have him catch something horrible. But what is with that mysterious disappearing-reappearing red bump?

Why can’t the government pressure the pharmaceutical companies to green those effing vaccines already? I think a lot of parents of children with autism would gladly vaccinate if some shots didn’t have aluminum and formaldehyde in them (I’m talking to you Hepatitis B!), or if they didn’t push them on kids at such a young age (again, Hep-B–necessary shot on the 1st day of life? I didn’t get it until I was 16–speaking of which, if all adults have it and all nurses have it and our blood supply is carefully screened, why on Earth is a Hep-B shot at birth necessary?! It’s not even a fatal disease!).

Okay, that rant is over, but it doesn’t solve my problem. Oscar has been on a delayed shot schedule, but he’s had one of everything and several boosters. I’m not too concerned about giving Oscar vaccinations at his age, especially since he seemed to present with Aspergers almost from birth. But Ezzie? Sigh. I know we’ll give them eventually, but how long can I realistically delay this?

It feels like every decision we make is a weighted one, from where to go to dinner, to whether to vaccinate on schedule. I really do envy parents of typical kids who don’t have to think so damn hard all of the time about everything. It’s exhausting, and it’s starting to show all over my face. People always used to think I was 10-15 years younger than I am. I still have a baby face, but it is definitely starting to show some major signs of wear. I think that as I age, a “concerned” expression will slowly be etched onto my mug—but there’s nothing I can do about it, because this is my life.

Ezra is getting weird with food. I mean, he was always a little weird, but now he’s veering into Oscar territory.

He refuses to pick up any food (except for dried food like Cheerios or goldfish) with his fingers. Won’t even touch it. In fact, if I, for instance, place a blueberry in his hand, he will drop it rather than eat it. He will, however, take my hand and move it to the blueberry to pick it up and feed himself. I’ve experimented–if I hold it in the palm of my hand, he will lean over and suck it off of my hand into his mouth. Will not touch with any other body part. Strange and induces a sinking feeling in my gut every time he does it.

He’s also been insisting on eating the same thing every day for dinner. Now, I know this is a normal toddler thing, but as I said before, I’m not an expert in “typical” toddler behavior.

Another fun development has been the screaming during bath time when he has his hair washed. I used to like bathing him, but don’t do it as often anymore.

I’m embarrassed to admit this, but I don’t wash Oscar’s hair very often. We have a babysitter come help in the afternoons, and she helps Oscar bathe, and has since birth.

Oscar has been screaming his head off EVERY SINGLE TIME he has ever had his hair washed, since birth. As a new mom, hearing my newborn shriek like that nearly killed me, so I passed that service along to the babysitter.

About six months after Oscar was born, I realized I had been suffering from PPD, which only exacerbated my lack of interest in bathing him. However, the screaming just went on and on, and I’m a softie who has to divert my eyes when my kids get injections (cannot bear to watch them in pain), so this is a chore I dread.

Ezra, on the other hand, always loved bath time, and I’ve had a lot of fun bathig him…until recently. I don’t know what’s going on. Is it regressive autism or a sensory problem or just a crazy toddler thing? Whatever it is, it trigger the sinking feeling too.

In many ways, I can see how very different my boys are from each other, but they are becoming more the same. Oscar’s symptoms get slightly better and Ezra’s slightly worse.

Oscar almost never did imaginary or narrative play at Ezzie’s age. Ezra does it all day long–almost obsessively–which is another concern.

Gee, I wish I had somebody to run this by, but since Early Intervention has basically been sucked into a black hole void and all of my money has gone to financing Oscar’s sensory gym sessions, I’m shit out of luck.

I just can’t afford to have two kids with autism. Sorry, can’t do it.

Unless Oscar becomes less autistic, or Ezra becomes so autistic that it can’t be ignored anymore, I’m just goig to have to dig put Oscar’s old body brush and pretend like I have a masters degree in occupational therapy.

I seriously wish somebody would brush me. I could use a massage with the stress I’m under! This is an untapped service market that Chinatown Qi Gong massage parlors need to hop on immediately.

I’ll let you know how the brushing goes. My guess is…not well.

I know I’ve been really quiet lately, but its actually been a good thing. My partner has been attending various autism events on the West coast (Special Needs Network Fair in LA and the Autism Speaks Walk in San Jose), and I’ve been actively preparing for the NYC Autism Speaks walk on June 5th, where Extra Special Kids will have it’s very own booth! Please stop by and say hi, if you’re I the neighborhood–there will be swag and intelligent conversation (okay, I lied about the last part–I’ll be getting up at 6am, so there’s very little chance of anything intelligent exiting my mouth).

It feels like a bit of a coming out party, and it kind of is, because there’s a very good chance we will finally be able to debut our gorgeous Lilly there. As you know, we’re on developer #3, so giving birth to the Lilly app has actually taken long than giving birth to Oscar.

Speaking of Oscar…we signed the papers at CSE and he’s officially in the special Ed program of our choice! Very exciting stuff, since we’ve heard nothing but wonderful things about the program. I am truly, deeply, saddened to leave his current school, though. I feel I owe them a major debt of gratitude. They took a husk of a boy (which he really was, after being treated so badly at his last school) and helped his speech, self-confidence, social skills, gave him friends, taught him how to write, and endless other things, all in the space of a year. I would marry this school if it asked me.

One disappointment I’ve experienced has been Early Intervention. Ezra was approved for services, and then that approval was overturned by the home office of Early Intervention. I was told that we could have an impartial hearing, and then told by the hearing people that the most we could hope for was a reevaluation, which is kind of a catch-22 situation, since they’ll inevitably overturn it again. Beaurocratic purgatory.

Normally, I’m like a pit bull. This is exactly the type of thing that would annoy the crap out of me and I’d probably spent the next year fighting. HOWEVER–I really don’t think I can win this one. The state of the Early Intervention program is basically non-existent now. Even our advisor told us that is was hopeless (off the record). She was very emotional about it, and I was too, but not because of Ezra.

Ezra will be okay. He has some challenges, but he will outgrow them with time and we can address them through private therapy. The real reason I was sad, is because I know that somewhere out there, there is a mom, just like me, who has a child, just like Oscar was when he was 2 years old.

I’m not exaggerating when I tell you that early intervention saved my life. Obviously it helped Oscar immensely, but I really think I benefitted more from it than he did. I learned about autism, I learned how his mind works, how to parent him better, how to address his needs, and so many other things, that my fingers would get tired if I tried to type them all here.

What is going to happen to this mother? I really could cry just thinking about it.

This is why it’s so important for writers, app developers, teachers and private therapists to pick up the slack left in the wake of the demise of Early Intervention. I know it’s just an app, but if I can do anything that will make a parents’ life easier for even five minutes, and maybe help their child with ASD or ADHD, I am so there.

At the risk of giving myself a kennehurrah, I have got to tell you about the awesome week I’m having.

1) The snooty school who lost our application sent us a refund check for the $100 application fee.  No, it’s not a fortune, but it’s the principle–and if you’ve been reading this blog, you know that enduring people with no integrity really chaps my ass.  So–hats off to the snooty school for doing the right thing

2)…speaking of a lack of integrity, we finally won out court case!!!!!!!!! Again, it’s not about the money, since a huge chunk of it will go to the lawyer and there’s really no way to quantify all of the time I’ve spent stressing about this case. However, the thing I’m most excited about is that I finally get to shout to the rafters and expose these scumbags. I’ve been biting my tongue for a year and a half now and it’s been killing me. I’m going to give you a rundown of what happened, spill the deets and name names. Normally, I would keep this kind of dirt to myself, but these people are so dishonest and ill-equipped to deal with the needs of typical children, much less special needs children, that I feel like tattling would be a public service announcement.

• My son attended their school for a year with a SEIT in tow from 2008-2009 in the afternoon program. They would only let him attend the two hours (or 2.5hrs a day) that the SEIT was mandated for, because they didn’t “want to take responsibility” for him, even though the class had six kids in it on it’s heaviest day and four on it’s lightest–and always two teachers (not including our SEIT). He did well in this class.
• We had many meetings about his ability to deal with a larger class in the Fall 2009, and I was worried about enrolling him, and then having him do badly there–and subsequently losing my tuition money, since we would lose it if we pulled him out ourselves (per their contract). They were aware of his diagnosis, and wanted him to return anyway.
• They assured me that if he didn’t do well, they would refund us a pro-rated amount (their policy if they they were the ones to ask him to leave). We agreed to give it a try, and we had the same SEIT return for three hours a day this time, in the morning.
• Oscar had social problems, was overstimulated by the unstructured class environment and not guided well by extremely young, inexperienced teachers.
• There was a little girl in his class that he developed a crush on and would follow around. She actually liked him a lot. Not being able to read social cues or body language, he sometimes had trouble expressing his affection properly. One day he turned her around to give her a hug when class was ending and she lost her balance and fell. She cried, but was uninjured. Her father was in the waiting area, saw this and freaked out and threatened to sue the school if they let Oscar anywhere near his precious little baby.
• I had NO idea this occurred. Nobody thought it was relevant information to tell us.
• We had a team meeting with the school and they said Oscar was doing great and didn’t say a word about this.
• Instead, for the next 12 days, they isolated our son on one side of the room, and wouldn’t let him play in any of the areas of the room that she was in–so if he wanted to color, but she was there–it was a no-go for him.
• He became fixated on the little girl, because they kept telling him he couldn’t go near her. He started trying to get her attention by any means necessary–throwing stuff, trying to hit her, etc. He never did this before they isolated him. Keep in mind, his SEIT was with him the entire time, so there was no way he would be able to “hurt” her, even if he wanted to. Also, he was three at the time–35 pound people aren’t that hard to control.
• The school called me one night and told me to come in the next day for a meeting—and to leave Oscar at home.
• When we went in, they told me they were kicking him out, effective immediately. According to their contract, they owed us a 14 day grace period before he would leave, so he could transition out slowly. They said he needed to leave ASAP, because of “safety concerns”, because in their eyes a three year old with a trained therapist standing next to him all day was a danger to society. I was blindsided.
• As a favor to us, they suggested he come in for one hour to say goodbye to all of his classmates, as if that wouldn’t completely traumatize him.
• They promised to help us find a placement for him somewhere else (I’ll let you guess if they followed through with that). They also promised to expedite the refund, since we are not wealthy people, and needed the money, desperately, for the 20 extra hours of child care a week we were now going to have to fill (yes, I work from home, but he really required two adults to be with him at all times during that period).
• They didn’t find us a new school, they didn’t refund our money, they basically froze us out—and then they violated his HIPAA rights by posting several pictures of him with his therapist all over their website and in their marketing material. I actually received a postcard from them with a picture of my son (with his therapist) and his class, whom they kicked out, asking me to sign up for fun Summer classes!
• So, in short—they completely fucked him up, ruined his self-esteem, stole our money, violated his HIPAA rights and then rubbed it in our faces by using him in their marketing material.

The next six months were the worst of my life and I think I must have cried every single day. At one point, my sister suggested I go on antidepressants, which I did, just so I could make it through the day. If you knew me before this happened, you would have been shocked to hear I was taking SSRI drugs. I’m not a depressive, it’s not in my nature, but when your child is broken and lashing out at you, it’s enough to turn anybody into Ingmar Bergman.

When we sued them, they never responded or showed up for court. Class acts. These people belong nowhere near children. Who are they, you ask? PRESCHOOL OF THE ARTS in NYC. Stay far far far away. Oh–and I’m not the only special ed parent they screwed over, so don’t say you haven’t been warned.

———-back to the good stuff now!————

3) Oscar got into school!!!!!!!!!!!!!!!!!!!!!!!!! It was one of the ones we really loved, and it won’t cost us a dime, and we won’t have to sue the school board!  I can’t begin to tell you how freaking elated I am about it. In fact, I need to finish off this post soon, because my husband is coming home to take me out for a celebratory dinner.

This also means we’re not moving to England–which I know is a bummer for my English family and friends, but I’m quite relieved, since the Special Ed schools there seemed really inappropriate for Oscar.

Anyway—–off to have oysters and drink champagne now (since we don’t have to pay for private school we can afford a night out).  xox

It’s been a pretty crazy month. I feel terrible that I took so much time off, but I’ve been burning the candle at both ends and something had to give—sadly, it was the blog.

I’ll catch you all up in bullets:

1) Things are looking cautiously good (kennehurrah!) for Oscar with the NEST program. Nothing is set in stone, but we’ve been jumping through all of the hoops, and have been told we’d be recommended for entry–though I don’t exactly know what that means in the scheme of things.

Oscar was given another ADOS test, as well as another unnamed test and we were told he he didn’t score “spectrumy enough” for the NEST program on the ADOS, but apparently scored autistic enough on the other. This whole thing is just insane. How can you quantify a person’s autism? I know in our house, my son can seem perfectly “normal” and calm one day and the next day he is screaming through the hallways and counting ceiling tiles to make sure there are an even number. It is so unpredictable! I really love this school for him though, and since we don’t seem to have many other options…

Anyway, he has (another) speech evaluation on Tuesday, and assuming he scores speech/language impaired enough for them, I’m hoping we’ll get their blessing. That may be a bit hard, since he (basically) has Aspergers and doesn’t have the language delay most ASD kids have. Never thought I’d say this, but: Pray he has a bad day!!

2) Early Intervention has gone down the toilet. I wish I were exaggerating, but I’m not. EI basically saved my life three years ago when they took charge of Oscar and trained me how to be a better mother and how to serve his needs better. Now? Pardon my French—Shitsville.

Shocking and horrible. We started the process for Ezra on January 31st. We had evaluations done about two weeks later. It took a long time for the therapists to turn in their reports, but when they did, the PT and OT both scored him as having a 33% delay. I waited and waited and waited for almost two months for them to give me a meeting date, only to learn that they revoked services for Ezra, without bothering to notify me (which is against the law). I asked our coordinator about it and she was very upset and told me she had no idea what was happening. Our agency wrote an addendum to the reports to support the findings–giving up the push for OT and instead focusing on just getting PT, since he’s been falling down a lot. Well, weeks later–rejection again!

Early Intervention my ass! It’s now May 1st and they’ve wasted 25% of the year with paperwork, misdirection and bullshit. We’ve put in a request for an impartial hearing/mediation and now will wait for them to come to the table to deal. I am just sickened by this whole thing.

I know they’ve had their budget gutted, slashed therapist salaries and had to increase the requirements to qualify for services–but now they’re intentionally wasting precious time, the time they place so much importance on as the whole thrust behind the theory of “early intervention”, and they don’t seem to care. It’s one thing to make it tough and to slash the amount of services given–but to delay or deny services to a child who actually qualifies?! Unconscionable.  I’ll keep you posted.

3)  Programmer drama. Yet again, we have hired a new programmer, which is why you have yet to see “Lilly’s” beautiful face grace your iPads. This makes our 3rd. Ugh. The last guy was so nice, but really didn’t have the knowledge of the software we wanted him to use. He tried really hard to accommodate us, but it just wasn’t a good match.

We found somebody new–in Japan! Crazy time difference, which means I’m not sleeping, but he seems totally on it, so we’re really excited. He’s putting the finishing touches on Lilly this weekend, and we should have something in the app store by the end of this month.

Next up: Timmy, which we begin production on May 9th. Also in development, is a very special software that we hope will blow the lid off of the autism community! Seriously, if we pull this off, I’m going to throw myself a parade.

4) I’ll see you all in NYC at the Autism Speaks Walk in June, where we will have a booth, demo our newest app, give out balloons, swag and promo codes, and just hang out. I’m really excited! My partner Allison was just at the Special Needs Network Fair in LA and will be at the AS Walk in San Jose his month, so if you’re on either coast for these walks, come by and say hi. We would love to meet you

Sorry to have disappeared for a while after such a depressing post. It wasn’t because I was upset (though I was upset), it was because I was too busy hosting that a$$hole Timothy Olyphant as a freaking house guest!

We actually left for Disney World last Thursday, on what turned out to be the trip from hell. We started off on the wrong foot by missing our flight, and then checked in to our hotel, which turned out to have no wi-fi(!!), no phone reception for Sprint, and no room service (more on that later). This is one reason I couldn’t post anything on the blog.

We had one glorious, wonderful day, in which we used the disability pass that Disney World let’s you get if your child is ASD. If you didn’t know about it–now you do. It helped immensely when we had to stand on line in the hot sun with tons of screaming children. As you can imagine, Disney is a mecca for sensory overload, so the less amount of time waiting around, the better.

We got home from the park, had dinner, went to bed and then Oscar woke up puking. And continued puking for hours and hours and hours until the action decided to head South and stay there all day. I can only describe the virility of this particular stomach flu as absolutely shocking and violent.

Eventually, things headed back North and he began vomiting again on day #2, which freaked me out, because at this point I had to carry him to the bathroom. I told my husband I wanted to bring him to the hospital, so this is what we did on Day 3 of our trip.

As soon as Oscar started feeling better, Ezra started vomiting. It was like the universe was trying to pace things out for us. We ended up cancelling our flights and stayed an extra night in the hotel (much to my husband’s chagrin), because I didn’t want to move the boys. By some miracle, we didn’t get sick (queasy and weak but not vomiting), so we were able to take care of the kids. However, we were not able to eat, since the hotel had no room service and only one restaurant located about a mile away! I lost three pounds.

As many of you know, it’s hard enough dealing with a typical child when they get sick, but when you have a child with sensory issues, things are majorly compounded.

After we got back, I thought we were in the clear, but both kids periodically vomited maybe once a day for several days afterwards, and yesterday Ezra had the big D.  This virus takes no prisoners. My parents, my brother-in-law and niece all got sick from this too. Lots of my friends on Facebook mentioned having it this past weekend and even the nurse at my doctor’s office said her daughter had it then too. It’s a superbug. Watch out.

One thing that came of this experience was my desire to have Oscar and Ezra’s health checked out. We had participated last year in an Autism Database study and never completed the last component, which was genetic testing. I’ve been thinking a lot about the possible root causes of autism and have started doing endless amounts of research on it. I don’t know what took me so long. Actually, I do.

Ezzie’s language and social skills have been regressing recently. He’s basically stopped responding to his name and his eye contact is not what it used to be. With Oscar. his symptoms were there from birth, so the spectrum disorder wasn’t shocking to me. Watching Ezzie begin to disappear has been heartbreaking.

For the record, this process began after his DpT shot several months ago. I don’t know if they’re related or if the shot was the trigger or if it’s all a coincidence, but his whole personality seemed to change after he got the shot. Gone was the sunny disposition. Nouveau Ezra would wake up crying several times a night and became extremely surly after nap time every day. Obsessive behaviors and tantrums started to form, but those could also be attributed to the Terrible Two’s.

Anyway, this freaked me out and so I’ve started to delve headfirst into the world of theories, medical tests and supplements. I’m having their metal levels checked and the study will test them for mitochondrial diseases and  Fragile X, etc. I learned about all of the vitamins and minerals and amino acids that ASD kids tend to be deficient in, and thought I’d give home treatment a whirl.

I bought a supplement called Behavior Balance which includes DMG, magnesium, folic and various other amino acids. The research I read said there were no adverse side effects, so I figured it would be okay to experiment a little bit.

Holy shit.

I’m not kidding, with Oscar, there was an instant change. Usually when he comes home from school, he is wild, irritable, tantrumy, and out of control. He has been eerily calm in the afternoon over the last five days. I have no had to do one time out or “quiet time” with him. It’s crazy. Again, I don’t know if this is a coincidence or if this is some sort of miracle supplement, but if it continues, I am going to start giving it to Ezra.

HOWEVER–even though his behavior has changed dramatically at home, and he’s an angel in school, the trip from school to home is a nightmare that seems to be escalating. He has been randomly hitting people on the bus or subway and screaming at people. Twice this week he had strangers threaten to smack him—-which is just crazy to me, no matter how nuts Oscar was acting, he’s five, and these people need therapy if they think it’s okay to hit somebody else’s five year old.

I’m not there, so I have no idea how my babysitter is handling (or mishandling) the situation. I usually try to distract him when he acts like that and if I can’t, then I take him off of the bus. She tends to get flustered, which is understandable, and tries to physically restrain him, which only makes matters worse IMO. Oscar is usually not aggressive.

He’s never hit another student at school, he occasionally pushes or slaps his brother over toys, but never without an antecedent. These attacks seem to come out of the blue. I suggested to my husband that we buy Oscar an MP3 player to bring with him when he travels. Maybe he gets overstimulated by the crowds on public transportation and needs to be distracted. It’s worth a shot. Other than that, we’re starting up again with the play therapist.

Will keep you posted.

March 21st is the one year anniversary of the show “Justified”, starring Timothy Olyphant.

Take a guess how my night went?

Yeah, I’m really ready for those sensory issues to go away. Really really ready.

March 21st is also my birthday, which has quickly become a source of anxiety for me, since I’m now on the wrong side of 35. Woke up with a bad cold, which should have really been a hint. I had to cancel my day out with my husband (my first day “out” in at least a year or probably more), which sucked, because my husband never takes off from work, even when he’s sick. The reason why he did it–more on that later.

Hubby sent me to a “spa” for a “relaxing” afternoon, where I got harrassed by a bunch of freak show Russian spa workers who kept screaming at me in Russian and intermittently preparing me for services I did not order and depositing me in a dark room for long periods of time with no hint as to what would happen next. There was also torture involved, in the form of really rough microdermabrasion (not requested), a brutal, stinging, camphor mask that nearly suffocated me with its fumes (again, not requested), and a cloud of something they referred to as oxygen that really looked and felt like a cold steam that gave me an attack of claustrophibia (this one, I actually ordered). It was a little like being in a less glamorous Bond film, where the Bond girls were in their late 40′s with bad dye jobs and Bond had a head cold and needed a tummy tuck.

Anyway, by the time I got home, I barely had time to pick out Oscar’s clothes for a school evaluation tomorrow and tuck in a really pissed off Ezra, who held a grudge because I was gone all afternoon.

We ran off to dinner, only to be called by our nanny on our way back. Oscar was puking all over the house. And how.

So———–now I’m up at 3 am making lunch for Oscar————which brings me to last Thursday, when I had a breakdown.

You’ve been there. You know what it’s like. If you have a kid with health problems, you have been in my shoes, or at least thrown my shoes against a wall in anger. I don’t lose it very often, but when I do…….not good.

Thursday was pretty low. The lowest I’ve been in ages. My husband really let the ball drop on something extremely important, and the anger I felt about it just brought forth a tidal wave of bottled up emotion. I realized I was miserable. I had no friends around and never had social engagements, no family nearby to help out or support me, no free time to do the things I need to do (like doctor’s appointments I’ve been putting off), no free time to do the things I’d like to do, not enough help at home, not love for my neighborhood, no joy, not enough time to shower every day, no time to exercise, on so on and so forth.

I realized I had nothing to look forward to when I woke up. I had basically turned into a robot, doing what needed to be done, and I was subjugating all of the things I needed to do to keep myself happy.

I felt sorry for myself, and basically sobbed uncontrollably on and off for the entire day and night. I was tired of being the mother of a special needs kid  (and another who may/may not be) and tired of shouldering nearly all of the responsibility involved in raising and caring for him. I felt like running off with the circus or changing my name and leaving the country. Obviously, I wouldn’t do either of these things, but I seriously considered them both at one point. I love my kids, but I felt like a martyr.

My husband admitted he was in a major funk and felt depressed as well. This was why he wasn’t as supportive as he could’ve been. This was why we didn’t do anything or go anywhere, why he phoned in the romance, and why he often forgot to do things he was supposed to do–things which always fell on my shoulders when he dropped them.

I pointed out that he got to leave the house while I had to stay home with a sleeping baby. He could go out to lunch, where as I had no place around to eat but home. He had work colleagues to talk to, while the only adult I got to talk to was my babysitter (whom I love, but I could use a little variety). Even basic human activities like peeing were worse for me  - he got to pee alone, when I had a visitor who always followed me in and ransacked my bathroom. He thought about my life compared to his and he felt bad.

The thing is, he’s allowed to feel bad about his life even if mine is worse by comparison, but just not in front of me. I’m sort of joking, but I do think that the partner who works outside the house often has absolutely no idea how much stuff needs taking care of.

We sat together and both admitted that we wished Oscar didn’t have autism. We’ve both thought it a bunch of times, but neither of us had ever really said it out loud. That doesn’t mean we don’t love him or don’t accept him for who he is, but I’d be lying if I didn’t admit he regularly consumes all of my thoughts and spare time, and that being with him is never a passive experience. My birthday was upon me and I really was feeling old for the first time in my life. OLD!

 What do you do at this point? You love your child, but hate the life you have to live because of them. I mean, you could be a bad parent and think of yourself first, or you could be a bad parent by resenting your child because you never put yourself first. Which is worse? How do you find a balance?

Time to find a therapist.

Very busy week. Oscar had an evaluation this week for the Holy Grail of public school special ed programs (ie- *free*), and I’m told he was well-behaved and charming, but those things don’t really matter, because you just don’t know how they want to compose the class. Do they need another “Oscar-type” or do they need a less verbal kid to balance out the class. After all, Oscar may be perfect for the program, but not the class composition.

We also got a surprise phone call today from that “cursed” school–the one we tried to tour three times and could never show up the right day/time–who wanted to schedule O for an evaluation at their school ASAP. Nice surprise, because we had completely written them off and they have pass-through funding, which means no lawyers or Carter grants. Also, Oscar’s class BFF happens to be going to the same eval, so he’ll be more comfortable and less nervous with a friend there. I think they may have planned it that way, which makes me like this school more, because obviously they care about his feelings of anxiety. Wish I knew what the inside of the building looked like!

I also got back into touch with the Autism Database Study that we participated in last year. We had done all of the tests, with the exception of the genetic blood test. We did the counseling, but not the test. I didn’t really think anything of it, because I’m pretty sure they wanted to test for Fragile X (which I don’t think Oscar has), but now that I’m starting to believe he has a mitochondrial disease, I want to know more. If this is an enzyme problem, maybe we can treat it that way, and the developmental delays will reduce? Cross fingers.

I’m making my husband take him for the blood test, I have a weak stomach for watching my little sensory guy have stuff done to him. I know it’s selfish, because he’d probably want me there for comfort, but I am the one who comforts him for 99% of his boo-boos and meltdowns, so let’s let daddy shoulder this one.

One exciting thing that happened today, was that I did a radio interview. My friend, Emma, has a radio show in London and she did a segment on parenting children with special needs. It was really nice and I realized I’m a way more passionate spokesperson for parents than I thought I was before, and I was WAY passionate before, so now I think I might be sliding into advocacy territory.

The main thing that kind of rubbed me the wrong way was the general attitude the British have towards special needs. This is not an indictment of all British people–my husband and in-laws are British, after all, and they’ve all gotten on board–it’s more an indictment of the British government for not pushing this issue into the forefront more.  British people, especially the English, really have a history of having a stiff upper lip in the face of adversity, and I think they have this kind of reaction to any kind of bad news. They’re not complainers or worriers, they like to take a wait and see attitude—all which are good qualities—but IMO 7-8 years old (as one of Emma’s guests, who was otherwise great, suggested as a good time to start getting help)  is WAY too late to start treatment if you suspect something is wrong. This is your kid!

I can’t imagine having an untreated Oscar living at home with me right now. I feel really strongly that parents know their own kids, and if something is wrong, why wait? If you thought you might have cancer, would you wait a few years to see how things panned out? Autism can be a cancer of some sorts, and kids who are inward and nonverbal can become much harder to reach as years pass. Your kid isn’t going to not be autistic, just because you go for an evaluation.

If they were diagnosed as being on the autism spectrum after you took them to the doctor, they were autistic before you took them.  Same kid.  The only thing you have to lose is valuable time and the ability to do early intervention and get them help when it actually makes the most significant difference. Okay–off my soapbox now.

Will post the podcast when I get it, so you can all listen to my abrasive Southern meets Valley Girl twang and halting, nervous speech. Hooray for growing up in the 80′s. It’s all, like, totally Molly Ringwald’s fault that I sound this way. I should seriously think about starting a class action suit against her on behalf of my entire ilk.

Speaking of London….sigh. That’s back on the table. My husband’s boss reallllllllllly wants us to move there and is willing to pay for one of those expensive schools we looked at. I mean–the schools there are $$$$, so this is an incredibly generous offer. Believe me, I’m tempted, but in my bones I feel NYC has  much better school and therapy options for Oscar, so even though life would probably be easier there in many ways, I just can’t do it. These early years are a precious opportunity (as I ranted above) and I just can’t give them up–even if it means my husband lives in England one week out of the month. Starting now, apparently.

Things are about to get grumpy up in this house, y’all.

Thank God for iPad autocorrect, or I’d sound completely incoherent. Actually, scratch that. Thank God for autocorrect when you’re typing on Ambien. When you’re “straight” and just typing too quickly, autocorrect actually does the opposite and makes you sound like a raving lunatic.

This is an allegory y’all…

…..or an Ambien haze.

Only time will tell. (the latter)

Despite that this has been the week from hell, both personally and professionally, the turnaround has been tremendous, and now I feel more positive than ever!

The big ta-do has been that we had to part ways with our talented software developer. I’m not Oprah, so I’m not going to break out his sob story, but things have been tough for him lately and it started affecting the work and so we had to bail. It was a hard call, he’s a nice guy. Maybe one day we’ll cross paths again.

But it turned around days later, when we gelled with this amazing software developer who seems to work in the same way that we do and really believes in our project. It was kismet—and also a life-raft.

It looks like we ARE going to be able to pump those next two books out afterall. Maybe not by our original timeline, but certainly sometime in April, which you all know is Autism Awareness Month. The games may have to wait a bit.

Another thing that got a new lease is my loud mouth. After epochs of fighting the good tweet, I gave in and twattered all over the Internet. That character limit thing is a good thing, like a bartender, cutting you off when you’ve had enough. Even if you slip another tweet by him, you know that hysterical tweeting will make you look like a crazy drunk person.

Anyway, the cool thing about it (who knew there was a cool thing?) is that I’ve met so many interesting people in my industry, it really gives me a good gage for the amount of passion for this subject that is out there–and also a scope of how many kids really do need this crap we whip up while sitting on our couches.

Reinvigorated!