Are we Alone in the Universe

Maria Lujan (someday I'll learn how to to the 'acentos sobre'!) got me on a thought and I thought I'd try to expand on it. She put as part of a comment on 'Crisis of Opportunity' :

and I feel as alone as in the beginning, 3.5 years ago- except by very few
exceptions-, in the understanding of what is advocacy for my son

I guess what bothers me about the whole advocacy situation is that 'aloneness' you mention. We recognized the symptoms in Liv, told the doctor and the doctor sort of told us we should wait, it's some kind of phase. So we were alone until we finally found someone to agree there was something serious going on with our little girl. But after that we found ourselves alone again to try and figure out what to do, with little more than a pamphlet and a prayer.

I remember distinctly the day Linda called me up at work and said "Do you know NJ has some kind of program that will PAY for her therapies!" Gee, you'd think that would be one of the FIRST things they'd tell you! Before that, we were trying to figure out how we were going to scrape together $20,000 to $50,000 to finance the 30 hours a week of ABA that the pediatric neurologist recommended. Wow, did we feel al0ne before that!

Once you get the therapies, you are alone again to figure out what your child should get. Speech, OT, ABA. Geez just finding out what OT WAS was a challenge. For the most part, you still feel that there is a certain level of we and they between you and your caseworker, so your isolation does not end.

When Early Intervention ends and you're thrown to the mercies of your township, again, you are on one side: the ignorant, ill advised, ISOLATED parent. You're fighting for the mental life of your child and you have to make sure you don't say words like 'I want' (what don't they just make you say 'mother may I', make it like a game!). Unless you've done your homework and/or you've hired an advocate, there's not much on your side. It's very hard to know whether you succeeded or failed, because there's no one to benchmark from, no one in your exact circumstances.

Let's take a break from this isolation talk and say a big THANK GOD for the internet. All these blogs and discussion boards made us realize that despite our apparent isolation, we had literally hundreds if not thousands who were there, are there or will be where we were in the near future. I'm convinced I would have gone off the deep end without this outlet (and inlet) called the internet community.

Despite all that virtual support we are still in this advocacy battle on our own for the most part. I don't know about you, but I feel uncomfortable talking to parents within my district about services. I feel it's like talking to coworkers about salary, it's almost taboo.

I almost feel like even within the household we are alone in our advocacy. Linda and I are so busy doing our things for Liv, Grace and the other three that we sometimes don't get to talk about goals, details of therapies and fears of what can happen.

Each person is their own island it is said, I guess dealing with autism puts that island further out in the ocean...or the universe.

Refugee, Part 2 (The Promised Land)

We had made up our minds that the area we had lived in for almost 12 years was not going to be a right fit for Livie. Now came the epiphany that we had about 4 months to find a new house, prepare and sell our old house, pack and move!

We made about a half dozen weekend excursions to Monmouth from before Memorial day until just after the 4th of July. After a dozen or two views, we kinda settled on a slightly smaller house in favor or a fantastic location, on a cul-de-sac with a family with four kids across the way! Even better, 4 of the 5 schools our kids would be attending were less than 1/2 mile from the house; that compared to 15-45 minute bus rides at the old house. I suffer the greatest with the commute, anywhere from 55 minutes if there is absolutely no traffic, upwards from 1.5 hours all the way up to the current record of 3.5 hours when a major artery is closed.

Meanwhile, we interviewed a couple of real estate agents. The first one, I wish I could have recorded! Your typical upper-middle age real estate with an aversion to germs. We found this out when she came to the door and I announced to her that we had a cold going through the house. Actually, it was Strep, I think. Me with my best Eddie, from the National Lampoon Vacation series saying "Yea, she's got a lip fungus they haven't quite identified yet." Her hands shot up like a surgeon who had just sterilized, she would touch NOTHING! She walked around the house like this sterile surgeon, not touching a single surface, she made ME open all the doors! I think she went through a half bottle of Purel. Clearly she wasn't a match for our 'infestation'.

The next lady was quite nice, smaller agency, but she seemed like she could sell. Before we signed though, Linda remembered a fleeting comment one of our ABA therapists had made. She had loved our new addition (my new addition, I LOVED my new addition ) and had said "let me know if you ever want to sell." As those who go through early intervention with therapists coming into your house, you get to know each others' lives pretty well, and we weren't sure if her and her husband were ready for the financial burden of a house yet. Long story short, we asked and she lept at the chance. What friggin' luck! Selling our house with no agent, no commission, sight, all-too-often seen!

OK easy part done now comes the NIGHTMARE! A house full of stuff accumulated over 10+ years. We are NOT organized, we hadn't intended to move not 3 months ago. We had recently expanded the house and commensurately the junk had grown (clutter is organic and expands as does other things in our household as I have previously explained). We had begun to clean up in anticipation of trying to sell, but now it was a full scale emergency.

We rented a self store, filled that up in a heartbeat, got a 20 foot dumpster, had to jump on that the night before to get more stuff in. Remember, through this Late July through August, Linda STILL has and infant, a pretty hectic 20 hour a week ABA habit, and three other kids to boot! I'm taking days off when I can, but I'm saving most of my time for the big move. We hired movers and had them help us pack. Registering for school, getting closings ready, major project going live on Jan 1 for me at work. Our lives were this cyclone of MADNESS!

The day of the actual move was the zenith of the craziness. More like, it was the spot on the roller coater where you finally hit bottom and you are just deciding that this was about twice as fast as you wanted to go...but there ain't no going back now. The movers were late and kinda underestimated the time needed to pack up the vans and get down there (I'm STILL packing stuff while their moving boxes etc out). Luckily we did not have to have the place completely
The caravan gets down to the new home around dusk. I can remember making snap decisions about where things should go, no tools to remove doors, something about not being able to move our fridge into the kitchen, vague memories about being talked into having the vast majority of the boxes loaded into the two car garage (note, the garage is STILL half full with boxes nearly TWO years later!). I just wanted it done, and the movers out of my new house and new life.
We survived that day, night and most of the ones since. Liv did have some pretty major regressions over the months before, during and after the move. The other kids have learned to adjust. Aly, in particular is slow to warm up to people and make friends. She had a few friends in Sussex Co; now she had to start all over again. When her one friend here moved away recently, both she and we were heartbroken. Dillan and Jason now have four boys to play with in the family across the street, another just a fence jump away. I envy the endless summers they are having and will enjoy in the future; they have the run of the cul de sac, a football sized playground from our backyard across the cul de sac into their backyard.

Well, there it is. I cannot do it justice, the absolute insanity of that summer; but here we are with twice as much as we could ever dreamed of as far a services for Liv compared to our old house. For that, I'll never regret the move...

Refugee, Part 1 (Oppression that drove us from our 'country')

I was inspired by the Mother'sVox post AUTISM MIGRATIONS to recount my exodus from the oppressive, conservative-minded viewpoints of the northernmost part of the NJ to the more centerist leanings (more leftist in its taxation and spending of revenues) of of my new home in Monmouth County NJ. I gauged it out, and it looks like I can have a blockbuster and a sequel. There's just too much to cover on one post.

It was the best of times, it was the worst of times. We had a house that we adored and a 40 minute commute I loved. It was 'God's Country' up in the northwest corner of the state. We had been working for the past 10 months with early intervention for our daughter who had been diagnosed autistic just under a year ago. We had a very good team for Livie; but it was to be swept away at the age of 3.

Our first meeting with the township social worker was not exactly reassuring. He had reluctantly confided in us that this was his first transition from an early intervention into a preschool setting for an autistic child. Great, maybe we mold this township into a model of autistic services (no, really, I wasn't being sarcastic at the TIME!). We had done our homework finding various districts who we agreed with their processes. We were mostly looking for the Verbal Behavior method of ABA and had about 5 schools within a 45 minute radius that we wanted to look at and another 5 we had as a backup to appease the budget gods in the town before we backed them into a corner and forced into our way of thinking.

We gave the social worker the list, all ten. He said he would contact them and see if we can arrange a look-see at them. He got back to us about a week later with a much MUCH shorter list. This one was not accepting any new ones, that one we couldn't get etc etc. We were down to 4...ALL from our 'backup' list. We dutifully went through three of those and had one that had basically 'play therapy and one that focused on the Miller method. Neither was even close to what we were looking/hoping for (preference was for a Carbone-type ABA).

The one we finally chose was the Miller location. It was a 35-45 minute bus ride for Liv, but the people seemed genuine, the parental support seemed OK and the program somewhat promising. We signed on the dotted line.

We got out of the IEP with decision in hand, we were somewhat celebrating, my mother-in-law was watching the kids, we went out to lunch. We had navigated the IEP process and we had Liv enrolled in a school. We talked positively about the outcome through lunch, mostly the ins and outs of the meeting itself. We left the restaurant and headed down the highway toward home. I had an overwhelming sense of impending, not doom, but mediocrity. I finally said "We settled, didn't we.... remember all the things we wanted? Remember the schools and the ideas we REALLY wanted? Remember the schools that we were going to look at 'just for comparison'? Well, those were the schools we were CHOOSING from."

"Where can we go though?" Linda said in desperate realization.

We had paperwork upon paperwork on autism, and we were accumulating a large 'Favorites' folders of things to read on the internet whenever we had the chance. One of the things we had was a COSAC of NJ list of recommended schools. Great little piece of info telling what method each school system followed. Linda was browsing through this list and asked me how far down Monmouth County was. I cringed, most of my experiences with Monmouth were in the southern half and my commute would have been a minimum of an hour and a half. "They follow CARBONE in this town!" she sad excitedly. So, I looked up the town, just to appease her, she knew the outer limits of commute time would have been an hour (no traffic). Luckily, it was in the northern part of the county, just under an hour commute with a tailwind, if no traffic, and if no state troopers!

We began looking to fit this very large square peg into the small round 'holes' of houses in the neighborhoods serviced by this school.

OK, good breaking point. Stay tuned for Exodus II- The Search for Services coming to a blog near you ....

Racist Ken and Barbie

One of the ways I cope with the life I have chosen is through humor. My humor is of the ilk of a Robin Williams; a no-holds barred, stream of consciousness, bizarre inter connectivity of the world. Case and point, I found my daughter playing with some dolls. Let's slip into diagnostic mode first. I love the fact that Grace, my youngest and 'mild PDD' for lack of a better diagnosis for a pre 3 year old, is playing with dolls, although much of her playing is really scripting of Dora episodes involving dolls of Dora, Boots and Diego. She will recite much of the lines in an episode, but I still like that she is somewhat role playing.

Anyway, to get back to the sick humor of the situation, Dora, Boots and Diego were joined unexpectedly today by two new characters. Ken and Barbie had joined separately on two different situations. Grace never gave them voice, but I did. "Hello, Hispanic children and strange monkey, do you happen to know where Barbie's bungalow is?" Ken said. I imagined him and Barbie as vain, bigoted, Southern California airheads. I'll not get into the biased viewpoints of the couple, as we have standards here, even on the internet. But you can imagine what the two would think and say to and about two kids not of the white, Northern European stock. I had Linda in stitches all afternoon though.

I'm surprised Robin never got himself into more trouble…

Autism night at TGI Fridays in NJ

I'm moving this one back to the top so that all you Jersey folks might try and get a good meal next Tuesday (TGIF may never be the same again ;))

***UPDATE*** Fortunately for TGIF, we were not able to attend, I got stuck trying to get around all the flooded Passaic River bridges in Paterson. HERE'S a link to TGI Friday's comments section so you can all tell how happy you were to here this was done in NJ and maybe they can do it nationwide next year!!!

This one came from our old therapist who is trying to disseminate this information for an obviously strong, and in her way, courageous young woman. I will use my very limited audience to help spread the word. I haven't a clue why this did, but it made me well up that this young woman saw this opportunity to help those families affected by autism in a very small and personal way, hope to see you there (the TGIF in our area will never survive the 7 of us going there, but we may just try):

To Whom It May Concern:

Could you please make copies and distribute this letter and flyer to all the families in your school. Also, if people could spread the word to their friends and family who have children on the autistic spectrum that would be excellent!

My name is Alexandra Abend and I have an 8 year-old brother with autism. I am a Junior in high school at Kent Place School in Summit, New Jersey. I was elected 1 out of 44 girls in the entire country to participate in a women's leadership conference hosted by Mount Holyoke College called Take the Lead. At this conference we were each asked to come up with a social action project topic. My action project topic is making families affected with autism feel comfortable and able to enjoy a relaxed family dinner at T.G.I.Fridays. I have already spoken with all the general managers in New Jersey for T.G.I.Fridays and they are all on board for the project. It is called Autism Family Night; it is taking place on April 17, 2007, it is only taking place in New Jersey this year. The families can go to any T.G.I.Friday's near them on April 17, 2007 with the flyer in order to make their meal more enjoyable.

This is important to me because my youngest brother was diagnosed with autism six and a half years ago and I have been extremely involved with autism and other special needs ever since (five years ago my father and I started a Sports Clinics for children with special needs and we have been running it ever since).

This project sometimes sounds confusing because people ask, “What's the project?” So, to make it clear, all I am doing is designating a day during Autism Awareness Month (April 17, 2007) for families affected with autism to come together and enjoy a relaxed family dinner without feeling stigmatized or uptight. In an effort to make the night more enjoyable for the families, I have given all the Friday's in New Jersey information to disseminate to their staff, which explains autism and some associated symptoms. This project is very special to me, and in order for it to work I need your help in distributing this flyer.

If you have any questions you can contact me at abenda08@kentplace.org, or if you receive any questions about the event you or those people can contact me at that email address also.

Thank you for your help and support.

Alex Abend

BTW, I have a PDF FILE of the flyer she mentions (yea, it's on COSAC's site finally).

Health Crisis or Crisis of Opportunity?

I started writing this as a reply to Harold Doherty's blog on the impending health crisis brought on by the increased diagnosis of autism and the lack of urgency in both the US and Canada for the generation about to impact the coffers of both countries as they turn to adults. I decided to see if I could expand it into a cohesive coherent post (fat chance, but here it goes anyway!)

I fear that Ms Dachel is more concerned with trying to prove the mercury/autism link than trying to help those affected by autism. She's trying to 'save' those poor souls about to be impacted by a lifelong illness and if she could just garner enough support, a 'cure' could be found. In short, she favors finding causations over treatments. While her goal is admirable, you don't just 'find' world peace or a single cause or 'cure' for autism.

We do indeed need to find better ways to circumvent, to mitigate, to eliminate symptoms of autism. The inability to communicate, the self injurious behaviors, the sometimes violent outbursts, the inability to concentrate, the lack of life preserving fear are some of the things that need to be worked on to improve the condition for autistics and their caregivers. But isn't it more an educational and societal crisis with some medical undertones than it is an health epidemic of mythic proportions as Ms Dachel likes to portray?

I would also like to put forth that those autistics writing essays may be some of our best advocates. The ones that can show society that these people are not just mere throw away, institutional-bound burdens on society. If we can get past the communication issues; the self injurious and violent behaviors; the ticks and stims, we do have potential productive members of society. Even if these autistics are the exceptions rather than the rule, don't they serve as benchmarks to show what CAN be achieved?

Part of my problem with this whole impending 'crisis' attitude as if pertains to the aging out of these 1 in 150 is that we honestly don't KNOW how many more children are seriously impacted. Do we truly have a large upcoming adult population of autistics that will need services or do we just have a handle on classifying a group of people that were just there to begin with? Do we have a brand new entire group of non verbal autistics coming up that will overwhelm the system with tsunami-like power? Or do we have better classifications of those formerly labeled as mentally retarded who now have an opportunity to be better helped because of the new classifications?

I honestly don't know what the next 10 years will bring. I'm pretty sure it will be somewhere between the budget shattering catastrophe that is being predicted by Ms Dachel, and the Y2K dud of a firecracker being foretold by some on the autistic advocate side. We simply don't know what positive impacts early interventions will have; everyone can agree that widespread early intervention and early diagnosis for that matter have only been around for less than 10 years. Most of this new 'autistic generation' aren't even teenagers yet. We simply don't know the impact of having many kids 'reclassified' as autistic instead of generically mentally retarded will be. Will the better understanding yield better results? We simply don't know how many quirky kids were missed in the past who were really the Aspergers we classify them as today.

Granted, there are enough challenges facing us over the next 10 years with regards to autism to fill a stadium. We do need better strategies for therapies for each 'color' of the spectrum. What we don't need, however is someone telling everyone the sky is falling or is about to fall. We need people like yourself, Mr Doherty, to get up there and show Parliament what you know and what needs to be done for these groups. I have no doubt that you have, you do, and you will continue to advocate in the future. We have their ear (somewhat anyway). Let's not shout in it, let's talk it through with them and work to mitigate this autistic Y2K bug on the distant horizon.

Just A Boy

I met a father and mother with an autistic pre-teen in the doctors office. We spent a little time talking to the parents and the one thing that struck me was the mother saying, that he understands EVERYTHING. He was non-verbal but looking at him and his mannerisms and his eyes, I could tell right away that he was there inside. He had great difficulty getting himself 'out', to say something, to react and interact with the environment we have for him. I told him as he was going in "See ya, do your best". I really did not know what to say, I had no magical words of encouragement to make him understand that he could maybe get passed all this.

I'm sorry all of you that find the the good in these situations; believe me, I find the same joy there as well. But this child NEEDS something. I'd like to say 'cure' but I know that is not the PC thing to say. But his autism is paralyzing him; MANY children are being paralyzed by the symptoms of autism. I'm not so sure that "hey, we're happy, everything's going great here, thanks" is the attitude to portray to everyone. I know, the 'life's horrible for the parents' angle is no good here either, but what about for the child? How can we extricate him from his prison? What if, God forbid, his parents are not as in tuned, financially stable or patient as the parents I met. Can society find and help these kids?

I dunno, I know I should not feel pity, but I did. I felt sorry for his situation, that he may never find his niche in life. Just like the NT may not find the right profession, the right soul-mate, the right education to achieve all they can be; it is 100X more difficult for an autistic person, especially one as profoundly affected as this child. I'm glad he had seemingly caring parents and he will gain every opportunity they can give him, I just fear for him because I think I know what he could be capable of and what his chances of actually achieving that capability are.
Sorry to be on a downer just before the Resurrection, I just hope he can find that miracle that will bring him new life...do your best...

Support Your Local TPF-TFU

Dillan came to me yesterday and said, with a hint of pride "Just to let you know, I changed the roll."
"The WHAT?" I snapped, somewhat grasping the concept.
"The TOILET paper roll!" he said.
"You mean, you didn't wait for the Toilet Paper Fairy to replace it?" I said with enough of the nick in my eye to let him know I was about to riff off on this concept. "Yea, he's a BIG guy, cigar in his mouth, plunger instead of a wand; comes out of the back of the toilet. I just assumed that EVERYONE in this house believes in him. After all, no one EVER changed the roll...until today."

Remove the little children from the room (and some adults)...... OK, now that we're alone, and we all understand that the Toilet Paper Fairy does NOT really exist. I am normally the winged creature in this household, bringing happy absorption to all good little believers. You all must know those believers, those leaving the brown cylinder on the roll in wistful anticipation of catching that little imp changing the roll. If you stop believing, you will wind up stranded on the toilet with a pot to piss in but nothing to clean it up with! Linda claims to be on my side, but I frequently find her setting traps for the little fairy in hip waders.

OK, I'm getting out of the business. I'm no friggen leprechaun, no fairy in tights, (well..every once in a while ;)) nor hip waders. We're unionizing the The Toilet Paper Fairies and merging with the Tooth Fairy unions. The TPF-TFU will fight for better working conditions (more stealthy abilities, better 'drugged' targets, vacation, hospitalization for those times that 'Bubba' gets us with the shotgun, etc.). If demands are not met, we will be picketing your child's bedroom as well as bathroom. If that does not work, we have 'muscle' in the form of closet monsters; so if you want to sleep (and sleep alone), you better meet our demands.