"Same Child, Different Day" Site Closing: Where to go now

Because of the useful and relevant information it provides, "Same Child, Different Day" will stay up and available. However, I will no longer be monitoring this site. Our life has taken a different direction, and I've developed two new blogs to reflect that.

"Read All You Want" is my writing blog, and I will be using it as a writing portfolio as well. It has autism anecdotes, but now only as they pertain to my writing. Please click here to see what it has to offer.

The second blog, "Our Journey, Our Way," touches on how autism affects us as we travel through life: to restaurants, bowling alleys, arcades, beaches, parks, theme parks and any other travel experience.  Please check it out, and feel free to share and comment.

In fact, please share this post, and bring your and our friends to another look at life with autism spectrum disorders.

Thanks for your loyal support, and I look forward to traveling with you and writing for you on my other blogs.

Choices We've Had to Make

Any of us in the autism community knows that, in order to achieve really substantial success, our kids need 25-40 hours per week of intensive therapy. Ideally, this comes from therapeutic centers and licensed, school trained providers. Hopefully, they are able to receive services at in a clinic environment, filled with tools and equipment specifically designed for speech, occupational and physical therapies. At one time, this was the situation we were fortunate to be in.


Sadly, as with all good things, over time this perfect situation came to a slow but inevitable end. First, the amount of time allotted for their therapies whittled down. From a couple times a week, to barely once every other week, the services soon became glimpses in time.

Next, the clinic closed. A unilateral decision was made that in-home care would be of the most benefit to our kids. The gym, equipment and tools were considered overkill and unnecessary; according to the private therapy organization that provided these services, the therapists themselves could offer all the tools needed for our children’s successes.

Then, these home visits every other week went from a one-hour session to 20-40 minutes per visit. Our providers would show up, spend about 7-10 minutes doing administrative work on their laptops, then our kiddoes would engage in twenty or so minutes of therapy, and finally, 10 more follow-up minutes would be taken to wrap up the computer’s administrative needs.

It was then that we made the unilateral decision to pull our kids out of these formal services. Twenty minutes every other week was doing them no good, and was becoming more of a pain than benefit. We had to break our day up that one time every other week, with basically no benefit from the meeting. Fortunately, we have, over many years, developed a fairly well-stocked therapy gym and have a pretty good supply of tools. Lori and I have been very consistent with our own therapy schedules for the kids, and they get a pretty good array of help from their school.

It’s been a little over a month since we parted ways with the ‘clinic’. The sun still rises and moon still shines. And --- can you believe it? --- the kids are still developing in in ways we never could have imagined.

While we’ve had some pushback from here and there regarding a lack formal services, we don’t see the problem.

Anymore.

One Down, Twelve to Go: Kindergarten Accomplished

Wow. One hundred and eighty days (give or take a snow day) have passed since Nolan started attending (mainstream) school. Thursday marks his last day of Kindergarten, a day that (quite honestly) we once worried we might never see.

We had questions last autumn before he started. Some were the concerns of any parent; others were unique to our son. We had concerns about field trips, waiting in line for lunch, meltdowns in class, riding the bus, academic comprehension, going to the bathroom (he still struggles with potty training), and making friends. And those are just a few.

Nevertheless, (while Nolan did have several days where we worried about his progress, and sometimes even his status at school) he made it!
o Some field trips that we knew would bore him he had to skip (going to a farm); bowling and swimming however, not a problem.
o There were mornings when we would get to school too early, he wouldn’t wait for the kitchen ladies to get breakfast into the chafing dishes; others days he would actually wait for a friend who was farther back in line.
o Meltdowns were unavoidable, but amazingly, the other kids worked right through it (and in public, many of them would admit aloud, “Mom, that’s my friend Nolan”).
o There were days Lori would have to pick him up from school because Nolan was simply not getting on that bus; another day, the bus simply forgot him.
o This is the boy who couldn’t speak in September; now he writes his name and whole sentences, and even reads!
o Somehow we/they worked through potty training (good luck next year, Angela and Mrs. Swift), and as for friends, if you were reading, you know we just covered that.

Take today for example. There was a Books and Beyond award ceremony at the school today. While everyone gathered in the room, Nolan waited. He waited while kids went to the podium to get their medals. And, when his name was called, Nolan went up to the teacher, dipped his head as she put the ribbon around his neck, and went right back to his seat. I had to work, but Lori saw every tear-squeezing second of it.

When Lori picked the kids up though, she stopped by work to get me first before making the routine trip home. By the time I got to the car, he was in Full Nuclear Meltdown.

But you know what? Even in public, I’m still okay with admitting aloud, “That’s my son, Nolan.”

Calling All Vermonters: Whether or not you are or know someone who is living with autism

As quoted from the Vermont Citizen Coalition on Autism Reform

We Need Your Help!

On Friday, March 12, the Senate Finance Committee voted an amended version of S262 (Autism Insurance Reform) out of committee. Disappointingly, this amended bill sidesteps the issue and calls for yet another study! It is being sent to the VT House of Representatives to be taken up by the House Committee on Health.

However, there is still hope for Autism Insurance Reform! This amended bill may be amended yet again! We are giving the House Clerk our original bill, along with our voluminous research findings, and asking them to take it up and work with us to craft a feasible bill, one that would be accepted by the House and Senate Joint Conference Committee.

Getting people to call or write to both Steve Maier, House Health Chair, and Shap Smith, Speaker of House, in support of the original bill, S262 Autism Insurance Reform, will be very important. We need you to share your stories, and say again and again that:

<> Autism is a medical/neurological condition that impedes a child’s ability to learn. Effective treatments exist. Insurance companies are discriminating against this particular condition and that is why we need this bill.

<> This bill has no affect on the State budget – It is budget-neutral. Furthermore, we believe it will save money for educational agencies in the long term by front-loading treatment and thereby decreasing the long term need for intensive support in school.

<> By providing an insurance payment mechanism, this bill will have the effect of increasing the number and availability of licensed autism treatment providers in Vermont at no cost to state agencies.

<> Schools are sorely pressed to provide the evidence-based treatment that ameliorates the symptoms of autism. They cannot do it alone. By providing access to effective medical treatment, this bill would decrease prohibitively expensive institutional placements. (The average institutional placement carries an annual cost of $279,000.

<> Society benefits by producing employable citizens who are capable of self-directing the course of their life with a lower level of community support and a lowered need for expensive crisis beds at psychiatric institutions.

We thank you all for your support. We believe passage of this bill have a beneficial ripple effect on many issues facing the autism community.

If you have questions, would like more information or would like to help us soldier, please email me here!!!

~ Thanks, Jon

Now Monitoring Comments on Same Child, Different Day

Good Evening, Loyal readers.

I want to apologize to all of you that I must now moderate the comments you post. I recently received a post from someone who was less than respectful to all of you. While I believe that thought provoking, challenging debates are healthy for our community, I do not have to tolderate abusive language or belittling comments. To those of you who share differing opinions in a respectful and fair manner, thanks for that and please continue to do so. You make us all the better for it.

That said, please click here to return to our current discussion, or here if you are new to Same Child, Different Day and want to start at the beginning.

Thanks and have a nice evening.

~Jon

Same Child, Different Day: So much more than words

I've changed up the sub-title of this blog a little bit. Initially, this blog was only going to be about the booklet: maybe I could give some good, helpful info, and possibly earn a little gas money along the way. But so much has been happening with this online forum, that I have to change at least a portion of the title so it better reflects the mission and purpose of the posts.

The main title however will never change, if for no other reason than --- frankly --- it's too darn clever to mess with. After all, doesn't the title reflect what we go through on a daily basis? Each and every day, Jimmy, Nolan, Chris, Max, Tony, Alex, Raymond, Hunter, Keera and all the others too numerous to mention are exactly the same child they have ever been; that they will ever be.

But one day --- whether it was bright and sunny, there was the prediction of a flood, it was a Tuesday, you had just come from a birthday party or had just gotten out of bed --- somehow you happened into the clinic that diagnosed yours. The doctor(s) may have been old, adorable, a friendly short lady, a doc on his way to retirement or a team of over-priced professionals. No matter --- whether you were shocked or prepared, whomever they were slapped you square on the cheek with a palm-full of gut-wrenching news, and left you with a "what are you gonna do about it" welt on your face.

All of a sudden everything was different. The sun wasn't as bright as before, the tears fell like rain, you couldn't recall what day of the week it was, the happy memories of the party had all but vanished and you just wanted to climb back into bed. The day was different.

Though it may have been happening gradually for a few months, the days now began to show signs of change more quickly. There was no more predictability; something had happened and now you couldn't use the same toys to stop the heart-squeezing cries. As different as each day became, so it too became ritual: you now had to take the same route to daycare every day or put every piece of clothing on your child in the same, mind-numbing order time and again. This, too, was different.

But there was something that hadn't changed; hasn't changed. That kid was still the same one whose temperature you took when they were sick, the same one who you couldn't wait to smell after a bath, the exact same one who captured your heart as the nurse laid their swaddled body across your chest. This is the exact same child that they ever were, and that they are ever destined to be.

That last statement is not said in the vein of desperation. On the contrary; may it ease your frustration. While we should never give up on pushing our children's potential, at the same time, we should not expect overnight miracles. What we should expect are frequent regressions, a slow pace and insane, overly-emphatic reactions to the smallest leaps and tiniest bounds.

One day 4-year-old Nolan will wow us with his computer finesse or deliberate acts of affection. Then two days later at an outdoor party, we won't be able to socialize with friends because we have to guard against his constant ricocheting toward the street.

Who understands what I mean? Come on, show of hands? See, that's what I thought --- those with your hands up, live it; which is the only way to appreciate it.

So anyhow, that's why I can't change the main title of the blog.

~Jon

Free Autism Family Support Services Booklet

Hello all: I'd like to elicit some help from my wonderful friends, families and readers. I'm calling out especially to those families who are beyond the first year after the autism diagnosis.

From Monday June 15 through Sunday, July 12 I'm offering free copies of Same Child, Different Day: One Family's experiences during the first year after a child's autism diagnosis. In return, I'd like your sincere evaluation of this autism booklet and your suggestions as to where it can be changed or improved. I'd like your supportive comments on how I can improve or grow the booklet. Over the past 10 months I've gotten some great feedback from families seeking autism support services, and I could use more.

I'm a glutton for constructive criticism, and would appreciate your honest, thoughtful, supportive input. In the end, I'll be able to decide what direction to take the third printing of the manual.

So for the next month, if you'd like to order single copies of Same Child, Different Day, please send an email to: jongilbert@rocketmail.com, and be sure to include all your contact information. Again, this is one copy of this autism booklet per household, and understand that I'll be nagging you for your feedback. Please keep in mind that if you are looking for more than one copy per mailing address, you'll still need to order from the sidebar to the right.

Also, so that I can keep this post at the top, I won't be adding another until after the 12th of July. Until then, send me an email for more information.

~Jon

Our New Web Page

Here's just a short note to ask you to please check out the new web page for Exceptional Parents of Exceptional Children (EPEC), www.geocities.com/rutlandepec or you can click here!

Now, About Those Lifestyle Changes

It's been some time since I've posted; I have been working on a few projects to promote Same Child, Different Day, and the Blog got overlooked. Back to it for you...

And for you, the next chapter in the booklet is titled "Now, About Those Lifestyle Changes"; it's no coincidence that this is the longest chapter in the guide. In this section I try to describe to you the scope of what we mean when we say "same child, different day". But I could only begin to give you a feeing for what you can come to expect. Your 'different days' will not mirror ours and to bequite honest, they won't mimic each other from one to the next.

As a matter of fact, the days of certainty and predictability will be replaced by unexpected adventure and learning. I feel confident when I say that I can think of no neuro-typical family who experiences or learns from their days quite as much as that of an autistic child. Just try to keep in mind that anything you are experiencing barely scratches the skin of what your youngster is going through.

In this chapter I also introduce the signature anecdote, simply titled "The Mall Incident". It vividly shares the often times embarrassing public meltdown, and provides a snapshot of what it's like to be on display for the world.

That's not to say you should shutter out the world, nor willingly hide behind walls. The stares and comments are aggravating, but you and your youngster with autism have the same restaurant, mall and hotel privilages as anyone not on the spectrum. Though convincing yourself of that will be harder that trying to enlighten strangers; even when their ignorance about autism may seem unbelievable.

Most frustrating and surprising though, can be the reaction toward your child from the very people who should be helping him. Even trained health professionals can be callous and insensitive. I share a story of one such encounter when we visited the office of Nolan's eye doctor. One staff member made us rethink a follow-up visit to that particular clinic.

To lessen the daily burden however, a short list of helpful tips is included in this section. Most of them are common sense and you may do many of them anyhow. But if not, (or even if you look at this list as a tiny reminder), we hope they'll prepare you a little better and make each day a little less different.

~Jon