The Deadline...

I remember, in a somewhat haze of the stupor of my early 20's, waxing eloquently with my friends about where we would be on January, 1 2000...at the new millennium. How OLD we would be, what we would be doing (and how we would all meet at the same local park on that night no matter what GAACK!).


I had another date that I looked 'forward' to recently, not with the same whimsical idealism, but with pressure and loathing: August 27, 2007, the day that Liv would turn 5. During our 'indoctrination' phase of the autism disorder three years ago, we had this idea of a ticking clock; this clock ticking off the time when she reached five years old and her brain would solidify. The time when it would no longer be possible to change who she was; that whatever point she was at with speech, socialization and attention would be how she WAS for the rest of her life.


This was one of the first things I remember when researching autism 'recovery', that whatever we were doing MUST be done early. God help those who wait. If you didn't start until 3 or 4 or God forbid 5, you'd be fighting with 2 strikes already against you. You better get your therapy going and you better cram it all in before 5, because the timer's ticking.


It was the finishing line, too. Where all the hard sprinting we had done for three years would show us that we had accomplished our goal. That Liv would be speaking, that the isolatory behavior would be gone, the social issues would be a thing of the past. We had this vision of a few months of really hard work with early intervention, then we would be richly rewarded for 'putting our heads down' and putting in the hours early in life. Then we would walk off and go back to a 'normal' life. Liv would be free of autism and we would be back to our neurotypical world.


I can't exactly pinpoint when and if it has stopped becoming a race. Our hope for a quick change back to speaking was definitely one of the first indications that this was going from a sprint to become a marathon. The more we read the more we realized that this 'cure' was a mirage, that there were many different types and degrees of autism and that Liv was not one of those that you would snap your fingers and she would talk, would stop stimming, would become 'normal' again.

We had visions of biomedical interventions being the panacea that would relieve us of the burden of having a lifelong struggle with autism. That magic pill turned out to be non-existent as well. Research has lead us to the conclusion that there are no easy answers as to causes OR cures. So everything we do now has turned from 'curing' her autism, to helping her deal with any discomforts and issues she may have.

By the time Grace was diagnosed some 18 months later, we were neck deep in autism already. We also had the child that we were 'prepared' when Liv was diagnosed; a child with less issues, more progress and better outcomes and expectations. But it was too late, we had changed already. We knew what to do, we did it, we had different expectations; I guess we hoped for the best but expected the worst.


But we still feel we have that pressure there to a certain point, but we have learned to ignore the clock somewhat. But that drive to do everything possible for her and not miss a beat is always driving us batty. Linda will try her best to manipulate the schedule to get every possible therapy into the day. She also devotes her 'free' time to researching and implementing various nutritional and suppliment regimens. All this within the confines of keeping our daughters happy and not overwhelmed. At some point, she/we will have to say when: emotionally, financially and physically. There is simply only so many hours in the day; so many dollars in the bank and so much tears and sweat that can be shed. We've run out of hours, we've run out of money, we've run out of expectations for miracles.

The reality is that autism will be with us for the rest of our lives. I've discovered that doesn't necessarily mean the end of our world or their world. There IS life after 5, and it can be as wonderful as we can make it. There will be challenges, and we certainly haven't given up on Liv or Grace, we have just adjusted our high expectations to something different. I'll not share them because I imagine that 3+ years from now they will change again. I just know that Liv has a long way to go; but she has strong legs to make the journey, she has a strong will and a strong mind to get her there. Grace, fugetaboutit, she's shown us the bridge between the two worlds, she'll be fine...

We're all in this for the long haul, the deadline is passing as I write this. I am a better person for it. Liv, well Liv is and will be who she is, I can only help her become...

Oh, Yea, Happy 5th Birthday Liv! Love, Daddy

Dad Moments

OK, OneDadsopinion has forced my hand and I have to write some of my dad moments (especially since he's got a link to my blog on his site...thanks).

I guess this doesn't have to be autism specific, although you know most of it usually directly or indirectly orbits the girls, but each will get a moment anyway:

Aly: This little sweetheart answered my call and got up at 6:45 this morning to watch the girls so I could get out to work a little early and Linda could get a few extra minutes sleep. She got four 'pressed pennies' from the Parkway rest stop that I was promising.

Dillan: Gave up the pressed penny Aly gave him, just to make his brother a little happier. Remind me to give him that Triple Chocolate Klondike Bar I hid in the freezer.

Jason: Was told by Liv and Grace's day camp school that he is SUCH a great brother for helping his sisters and mommy getting in the school by carrying bags and opening doors. Mom couldn't do it without him. He got the pressed penny...

Liv: Has been lying on the pillow facing me on the other side of the pillow as I try to get her to sleep and she just smiles and beams, I even get the occasional quiet "dadi"! Don't know WHAT I could possibly give her to pay for that!

Grace: The "DADDY DADDY" at the top of the stairs while rattling the gate when I get home, gives me the energy to get through the last push of the evening getting everyone to bed. I opened up the case of Bristle Blocks she asked me for even though I knew it would get turned upside down and dumped, adding 5 minutes to nightly cleanup.

Wow, that was the easiest post I've written in a while! Probably could do that EVERY day...

Easy Breathing for Autism May Constrict Towns' Ability to Breath

Ralph James Savarese started up on Huffington Post with a post called Easy Breathing, about his autistic non-verbal son's ability to communicate his viewpoints via typing instead. His son rightfully points out the injustices society heaps on the disabled, particularly those with communication disabilities. He draws parallels between disability rights and the civil rights movement. While I wholeheartedly agree with his premise and conclusion, I'm having a little trouble with the real-world application. Visionaries see the goal clearly, but leave the difficult path for others to find.

While the civil rights movement sought to integrate and treat everyone the same regardless of race, I have trouble deciding whether we are asking for society to segregate disability and treat them special or are we asking for society to integrate the needs of the disabled into society's 'norms'. Rhetorical question, but it wasn't when I first started to write it. Strange that discrimination can so easily be ingrained into our psyche as to think there is something wrong with what is being asked rather than something wrong with society itself.

I still think there is an issue with the way education is currently administered in the US. With the townships currently having the autonomy to do how they see fit with education, yet burdened with the responsibility of carrying out the laws of the land as far as providing a 'least restrictive environment' to those disabled students, there is going to a backlash of funding fights in town halls in the near future. It just seems to me that all these special services, aids, equipment will have to come out of the township pockets. Will it come to a head when the increases needed to pay for these services are rejected as they are voted down? Or will there be a move to keep those 'undesirable' burdens out of towns so that the extracurricular activities can flourish? Local societies are going to have a tough time in this brave new world, the same way they did when they had to adjust to having neighbors with different skin colors, languages and religions. The only difference here is that they will feel it in their pocketbooks...don't expect to mess with someones finances without some kind of fight.

We need state and federal governments to step in to help townships deal with the larger burdens of equipment (communication devices can get into 5 figures), aids and special services. Right now it's either up to overburdened townships or flat broke parents to provide such services. As a recent court battle exemplifies, townships are getting desperate and stupid in their quest to deal with the high cost of special education.

So, I don't fault Ralph James Savarese and his son for having a vision of where we should be with disabled rights. As parents of autistic children we have all had to blaze a trail as far as services, treatments and rights. It's good to have a goal nevertheless. See you at the lunch counter where we can stim,type and scream for service...

Braggin'

OK OK, I've been negligent in my posting duties of late. Today, i'm going to take a slightly different tack and just flat out tell you about how Liv and Grace are doing and what we've been working on and with.

Liv- As I posted on AutismWeb a few days ago we had an exciting report from the private speech therapist the other day. During a setup of plastic food Livie whispered "I want food". The therapist wasn't sure she heard it right, but later on in the session she whispered "I want book" and "Where book". Liv's been in summer school aince July, and one of the things they're working on in PECS is adding a second icon to her requesting. "I want" and "cookie" pictures to request a cookie rather than just the "cookie" picture. The school will vocalize it as well when they do it, this just proves that Liv is generalizing what she learns.

Now comes the hard part; getting it to stick. The problem always seems to be consistancy across all areas in her life. This time, we at home have not yet implimented the "I want" and "where" icons. I'm off this week so we should be able to get this stuff in place. We need to especially, since this is the end of smmer school and the week she is off before she starts her CPU (Children's Progress Unlimited in Hazlet, great program) filler between summer school and fall.

On to Grace...Gracie continues to charm, astound, amaze and exasperate us. Echolalia is probably her main issue. It's always strange having one you're looking to get ANY word out of and another that you get upset when she rattles off a dozen words (exact dialog from a Dora episode). She also has some trouble transitioning, but we're relying on our CPU connection once again for that as well. Other than that, my littlest girl is moving in the right direction, and we are looking for great things over the coming months.

My girls have made some gains over the summer, which is much more than we can ask for. Had we relied on the township, there would have been several gaps in their summer programs, and I'm not sure without the fillers and the private therapies, if we would have have regressions rather than PROgressions.