Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Tuesday, March 19, 2013

Walking for Autism Awareness


My family and I are participating in the Georgia chapter Walk Now for Autism Speaks this May. We are so lucky to have the resources we have but more research means even better resources for our little boy and for the countless other little boys and girls who struggle in the same way. The icon below will take you to Alexander's individual donation page. Please take a moment to consider donating in support of his walk. Any amount you can offer will be appreciated! 

Monday, January 14, 2013

For the queue

To disgruntled person in Disney World line,

Standing in this line is difficult for you, isn't it? The crowds, and the noise, and the physical strain of standing in one place for a while can be overwhelming. Makes it hard to control your outbursts, doesn't it?

Now, I want you to think about that irritation you’re feeling. As I've said, it’s perfectly understandable. But I want you to think about it, really embrace it - and now I want you to imagine that you’re 5 years old. I bet waiting in this line just got even more trying for you, didn't it?

Now imagine you also have a sensory processing disorder. This means that every sensation is multiplied. Without on-going therapy, even simple sights and sounds that people usually enjoy can occasionally send you into a frenzy or render you catatonic. So imagine what happens with an overload of unpleasant stimuli.

Now I want you to imagine that you have Autism. Along with a list of stumbling blocks as long as my arm, this means communicating is especially challenging, if not impossible. It’s not your fault, but people can’t always read your mind and sometimes crying or throwing a tantrum is the only way you feel you can be understood. You don’t mean to hurt or annoy the people around you but you can’t talk and sometimes it’s just all too much. Your parents and other family and friends watch you very carefully, and try their hardest to maintain the balance of stimulus and rest so you can have something like a normal life experience. All you want to do is have fun at Disney World, because after all, you’re 5, but sometimes you need people to cut you a break.

Now you can be you again. Maybe this is a relief to you, maybe it’s not. But you get to choose. You can let the strain get to you, vent your aggravation on passersby. Or you can switch gears and choose to be happy in the “happiest place on earth.” Maybe take a cue from my special needs family and take a rest break if you’re feeling grumpy. It’s really all the same to me. I’ll continue to push or accommodate my children as I think best. It just might help you to remember, you’re not alone in the world - my son has certainly experienced frustration, just like you.

Best wishes,
Amy B.



A little note I composed after a little research into the Disney Guest Assistance Cards and the snide remarks some people have faced when using them. I guess this could really be handed out to any "snide remarker" in a line whether you were using a card or not. Just things I wish I could say to people who don't get it.

Thursday, August 30, 2012

Long Sleeve Shirt --- Sensory Processing Tool!

Last weekend I had the opportunity to attend a continuing education course given by Children's Healthcare of Atlanta called "Sensory Processing: Behavior, Memory, Learning." The target audience was speech, occuptional, and physical therapists but parents were invited as well (with a nice discount on registration fees, I might add.) So worth the price of admission! The instructor was a woman named Laura Barker and she practically had me crying (tears of hope) by the end of the class. It was an all day course so I won't even attempt to represent all the things I learned in this post but I would definitely recommend visiting her website www.sensoryprocessing.com and looking into a READY Approach class in your area.

One specific tip she gave us was turning a sweat shirt into a weighted (Deep Pressure Input) device. (If you've never heard of weighted blankets or compression vests and don't know what I'm talking about, go here). The weight is sewn into the arms of the shirt. The torso section can be pulled down over the back of a chair, and then the arms can be wrapped around the person and rest in their lap.

I didn't have a sweat shirt on hand that I thought would do what I wanted it to so instead I pulled out one of my old long sleeve stretchy T's. You'll want to pick a shirt made of a sturdy fabric, especially if your kid likes to chew on things the way mine does. (Alexander actually chewed a tiny whole in his wrap in the time it took me to come up here and start this post. So I'm going to need to revamp a little but if you pay attention you should be all good.) The shirt I sewed up is white but here's a black version so you get the "supplies" idea. 
The Homemade Weighted "Hug" Wrap

Supplies:
Adult sized (small or medium) long sleeve shirt
3 lbs* Poly-Pellets (Stuffing Beads)
Sewing machine (threaded)
Rubber band(s)
Scale (optional)

*The weight recommendation for any therapeutic weighted object is one tenth the body weight of the person for whom it's being made. My son weighs 29.25 lbs. I rounded that to 30 and used 3 lbs of beads for his "hug wrap". You'll need to know your child's weight and scale the measurements accordingly.

Step 1:
Grab one sleeve to start with and use your machine to double stitch it shut at the bottom. Keep sewing off both edges to ensure the sleeve is completely sealed off. You don't want any of your little beads working their way out.

Step 2: 
Measure out (or guestimate) 0.5 lbs (ie: 1/6 total quantity) of beads and pour them down into the closed off sleeve. 

I grabbed the food scale and a good sized cup from our kitchen. The scale's tare function allowed me to use the cup to hold the beads while they were weighed. Then I pulled the "mouth" of the sleeve over the top of the cup and flipped the cup over to pour the beads in. (Dealing with these itty-bitty beads is a bit of a pain, but my method seemed to work well this time.)

Step 3:
Use the rubber band to tie off the sleeve with the beads as well packed as you can get them. 

I cut the rubber band and used it more like a tourniquet so I could really get it tight enough not to let any beads through.

Step 4: Double stitch through the non-stuffed part of the sleeve as close to the rubber band as you can without sewing through bunched material. 

If you look closely at the picture above, you can see my stitching about an inch to the right of the rubber band. It took some finagling to get the material to lie flat so I could get a really good closure. Just take your time and don't worry too much about a straight line, as long as no beads can get through, you're good. 

Step 5: Measure out (or guestimate) 1.0 lb (ie: 1/3 total quantity) of beads and pour them down into what is now the top half of the closed off sleeve.

Step 6: Repeat steps 3 and 4 with the top half of the sleeve. 

Step 7: Repeat steps 1-6 with other sleeve.
Finished product
Test Run
Snug as a bug in a rug
I'm considering adding "fidgets" with velcro (might cover that little hole I was talking about) but now you have the basic idea. I plan on caring for my hug wrap by hand washing and then laying out to dry. If I get really courageous all of the sudden I may try a machine cycle on the hand wash settling and maybe even try a tumble dry on low. I just can't imagine what all those little beads would do to my machine if they got loose somehow.

Big Honking Disclaimer: I am not a medical professional. This is a home made item and hasn't been studied or endorsed by any of those fancy government mommysitter agencies. Please judge for yourself whether this sounds like something you want your child to be using (with or without supervision.) You may also want to discuss weight therapy with your child's doctor before proceeding.

Wednesday, April 18, 2012

How I Roll

Last week I took my boys on a flight to Kansas City. I've actually flown alone (no other adults) with my kids several times in the past few years and I've got the procedure down pretty well, I think. When I saw a post on myautismteam.com asking about taking a 3 year old on a plane trip (and whether or not it's worth it to bring a car seat along), I found myself composing quite a lengthy response. Once I hit the 5th paragraph, I decided it might be more efficient to turn that comment into a blog post and just link to it on myaustimteam. So here it is!


I would absolutely recommend bringing a car seat for your 3 year old on a plane. For one thing, the familiarity and a feeling of security help a lot (this is especially true for children with Autism). And, at least for my son, who is very small for his age, the lap-only belt on the plane seat wouldn't do a ding dang thing to hold him in place, whether the cause of sudden movement was hyperactivity or turbulence.

First thing to do if you're going to bring her car seat is find the notice on the car seat that says it's certified for use in motor vehicles and aircraft. Make a mental note where that sticker is located because there is a chance you will encounter a snotty flight attendant who will try to tell you that you can't use a car seat on an airplane. Then you can politely tell her that yes, yes, you can, because there is a law saying qualified car seats must be allowed and here's the sticker saying this particular seat qualifies.

Since I occasionally (more often than not) travel alone with my kids it would be physically impossible for me to carry a car seat in addition to holding onto my two boys AND carry-on bags. So, I bring a regular stroller with me and I use the toddler car seat's "latch" straps to hang it off the back of the stroller. This is not for a child to ride in, it is just to carry the car seat through the airport. Most airlines allow you to check a stroller at the gate at no additional cost and you'll get it back as soon as you get off the plane. You will have to unlatch the car seat at security and put it and the stroller on the belt for the x-ray scanner with everything else. (Side tip: The weight of the car seat *will* tip the stroller over if the stroller is empty, so unlatch the car seat before trying to take your child out if you want to avoid embarrassment and frustration.) 

I also accept help whenever I can get it. If someone notices that I'm struggling at the bottom of the gangway, juggling two small kids (one who doesn't want to get out of the stroller and one squirming to get down off my hip), a car seat, a back pack and a huge diaper bag, and offers to carry something on board the plane, I let them. If no one offers, I ask a flight attendant. It sounds like you'll have adult help already and I would advise you to depend on them. 

Whether I bring a car seat or not, if I'm traveling with kids, I bring the standard boredom busters and snacks. (Playing movies on our iPad allows me freedom our fore-mothers couldn't even dream of.) Of course, I give myself extra time to get through security and I don't even attempt to be the first person off the plane. If I'm not in a rush I'm almost guaranteed to work more efficiently and therefore, in the end, more quickly. It also helps my kids' tantrums not to escalate as quickly if I make a conscious choice to be calm and nonchalant. This last trip I was literally the last person off because I waited patiently for everyone else to make room for the flight attendants to get to me and carry the things I didn't have hands for. 

I may be the nightmare of the business man who is used to booking it through security (Hi, Dad! ☺) but this is what works best for me and my boys. If I'm holding you up, Mr. Late For His Flight, offer to fold my stroller for me and be grateful that Alexander is the one having the meltdown because MY meltdowns aren't as sweet.


Thursday, March 22, 2012

"Duhs"

I've made a lot of lists in the past few weeks. Making lists helps me cut down on stress because if I have something important to do, but don't write it down, it plays in may head repeated until I do. Worse than having Rebecca Black's "Friday" stuck in your head. To help me hone in on what's most important, I've been making even more extensive lists than usual so I have less things floating around my brain and distracting me. Shopping Lists, Wish Lists, To-Do Lists, To-Don't Lists, etc. All kind of like Dumbledore's Pensieve. Once I get something out of my brain, it's easier to decipher and deal with.

One of my lists ended up with the title "Duhs" at the top of it. This was a list of things that I should be doing regularly (if not every day). The list includes but is not limited to:
Mommy/Son therapy time
Mommy/Son snuggle/giggle time
Mommy cooking practice
Exercise
Weekday Cleaning Schedule

The list doesn't actually contain that many lofty goals if I were to really focus on what's most important and not let bad habits and laziness run my life. Some of the items I'm already good at and some I'm not. Some of them are really vital and others could be skipped, but I'm learning that I'd rather not suffer the consequences that come from letting them go completely.

Tuesday, March 20, 2012

FlyBaby

Lately I've been working on refocusing my energies on my family and our house. I still need to be able to take time and recharge my own batteries and cultivate some "non-essential" talents. But I'm trying to go about daily life more on purpose than I used to. Basically I was miserable for about two months after we got Alexander's diagnosis. Then I realized that a lot of my old habits just aren't sustainable amidst these new challenges (ex. sitting on facebook for extended periods of time does not give me a boost of energy or help me feel motivated to "get back to the day." It sucks me in and I'm lucky if I resurface before the boys have added 25 more things to my cleaning list.) I simply have to grow or I'm going to be crushed by the onslaught of "stuff I have to do" and suffocated by my own feelings and reactions. This does not mean that all of the sudden, two weeks ago, I became a perfect, glorified being. Everybody else, even Kevin, may not have noticed that big a difference in me from February to March. But I've noticed a difference. I'm not "happier than I've ever been" but I'm definitely happier than I was a month ago.

I signed up at FlyLady.net and diligently implemented the first two baby steps (Shine Your Sink and Dress to Shoes). Since then I haven't even visited the site again but I also haven't needed to. I have NOT kept my sink shiny-clean the way she says to but I have embraced the Getting Dressed to Shoes concept. It really is just like she says, I think twice before laying down for a snooze on the couch if I have my lace up shoes on. And I don't have any excuse for not going outside to play with the kids, or running to the store, or walking the trash can to the curb. Once again, people may not notice a difference when they come to my house in the level of its cleanliness, but I feel like there's a difference. I've gotten several Spring Cleaning/Organization projects done and I really feel like I owe it to my shoes. The dishes and laundry still pile up a bit but I feel slightly more empowered to handle it. And let me just tell you, spiders don't give me quite the same panic attack when I'm wearing my sneaks.

There's also a different mindset that comes with getting fully dressed as if I was really going to work (teeth brushed, makeup and deodorant on, the whole nine yards). I get in a groove, I put on my Hilary Weeks or Josh Groban Pandora station. I'm better at plowing through the chores and minutia and just getting it over with instead of letting it take up the whole day. This obviously leaves more time for other more pleasant endeavors. I've played outside with my kids more in the past couple of weeks than I ever have before. The early arrival of Spring, I'm sure, has also contributed to this development, but I'm just more motivated in myself than I've been in a while.

I guess you could say I look at all of this as evolution. My to-do lists have changed, my goals have changed, even my prayers have changed. They kind of just had to. And I'm grateful for the grace I know I've been given. I couldn't have gotten even to this point on my own.

"I ain't as good as I'm gonna get, but I'm better than I used to be."



Monday, March 19, 2012

Katie Beckett Continued

**The following post is documentation of a personal experience with applying for the Katie Beckett Deeming Waiver in the State of Georgia, Barrow County. This information is given only as an example and is in no way a guarantee of like experience. The author is not a representative of the State of GA, Barrow County, or DFCS. The forms and procedures listed can (and probably will) go out of date without any note on this blog.**

Since I wrote last it has been approximately 45 days. This was the turn-around-time estimate given to me by my DFCS caseworker. Sure enough, I received Alexander's letter of APPROVAL (yay!) yesterday via certified mail. My caseworker also called me with the good news. So now that I'm personally out of those particular woods (my to-do list actually just got bigger, not smaller, with this new development) I wanted to update my Katie Beckett (Deeming Waiver) Checklist. So I did that but now here is the rundown of the experiences that helped me remember what I didn't include before.

- I can't believe I forgot to include the Psychological Eval in my checklist AND in my packet! This would be the report you received/will receive when you got/get a diagnosis of Autism from your (insert specialist here: we used a Neurodevelopmental Pediatrician). I worked for months to get the diagnosis and waited with bated breath to receive the report and then when it came time to hand in Alexander's Katie Beckett packet, I left the thing out. But it obviously wasn't the end of the world. Even my caseworker forgot to include a request for it in his first round of "you left this out." So I got a call from him a few days later asking for it. I pointed out that he hadn't made any note about it being missing on my Verification Checklist and he apologized and said he'd be sending me a new Verification Checklist. (Which he did.)

- Realizing the above oversight also reminded me that I didn't really go over the fact that you can't just go to a regular pediatrician to get an Autism diagnosis. In my experience, there wasn't a single person (doctor, therapist, special ed teacher, etc.) who would even say the word Autism in my presence without me bringing it up first. And then they would either say they didn't think he had Autism (which I believe was their honest opinion) or explain that they didn't have the authority to make that call (in which case I wondered if that meant they thought he might have it). This is because of mal-practice lawsuits. The people around you are protecting their butts by not expressing opinions about what your child "has." You can't really hold this against them with the way lawsuits work today (I mean, even I felt compelled to write a disclaimer at the top of these checklist posts), but the knowledge you should take from this is as follows: Find yourself a Neurodevelopmental Pediatrician, Developmental Pediatrician, or Developmental Psychologist. These are the people who CAN make that call. (There may be other specialties that also have that "power" but I don't know what they are.)

- Somehow, I really don't know how (I was reeeeally OCD about this paperwork, so I totally don't get it), I missed a signature line on the Level of Care Statement before I sent it in. This meant that a couple weeks later I received a Technical Denial of Services. (ack!) A Technical Denial means just that, a technicality is holding up the proceedings and you won't be able to get approved until it's fixed. This letter came via certified mail with a photo-copy of my filled-out Level of Care Statement for me to sign and return. Really not a big deal but I actually almost missed picking the letter up at the post office before it was returned to the sender. See, you have to sign for certified mail and apparently I didn't hear the door both days they tried to deliver it, hence a trip to the post office. So, I guess there are two lessons here -

#1) Have a buddy (a fresh set of eyes) look over the paperwork before you send it in to make sure you dotted all the i's and stuff.

#2) When your waiting for your Deeming Waiver Determination, assume that all certified letters coming in the mail are probably going to be about that! I totally thought the certified letter was something for my husband and when he didn't seem to know what it was, I figured it wasn't very important and decided to not stress myself out about going to retrieve it from the post office - ! Man, I can be a ditz sometimes.


Tuesday, February 7, 2012

Katie Beckett (Deeming Waiver) Checklist

**The following post is documentation of a personal experience with applying for the Katie Beckett Deeming Waiver in the State of Georgia, Barrow County. This information is given only as an example and is in no way a guarantee of like experience. The author is not a representative of the State of GA, Barrow County, or DFCS. The forms and procedures listed can (and probably will) go out of date without any note on this blog.**

**Updated 3/17/2012**

I wanted to take a minute and reach out to those parents (in Georgia specifically) that are starting to navigate the process of seeking government aid for their child with Autism (or other disability). I am by no means finished with the road I'm on but, knowing the work it took even to get to this point, I want to help others on their way.
***
Brief History (taken from CHOA Deeming Waiver Information)
The Deeming Waiver is a type of Medicaid that helps to cover the costs of medical treatment and therapeutic services for children with physical or developmental disabilities. Before the Deeming Waiver, the government would subsidize care for a disabled child ONLY if the child was placed in a state institution. In 1981, the parents of Katie Beckett fought to get financial assistance while caring for their child at home. Now, the Deeming Waiver is helpful to families who make “too much ” to receive financially based Medicaid, but who need expensive services for their special needs children. 
***
Back at the beginning of January, I shared this post on my family blog about my son Alexander's diagnosis of Autism and some of the resources we were looking into. I included a link to the CHOA Deeming Waiver Checklist I was using (in addition to some other links). While that checklist has a lot of good information (you'll see it peppered through this whole post), it is also sorely out of date (which I had a suspicion it might be). I ended up turning in one form that wasn't even needed and leaving out 2 forms that were needed in Alexander's application. So, after all of that, our new case worker (who wasn't assigned to us until I made the initial application) sent me a new checklist and the forms I was missing.

The following checklist can be found online at http://dhr.state.ga.us by searching for "Katie Beckett Cover Letter." The cover letter itself is a .doc file that will instantly download when you click on it (at least that's what it did for me). Here's that instant download link: Georgia Department of Human Services: Katie Beckett Cover Letter. All of the forms listed in the checklist can be found by visiting http://dhr.state.ga.us and searching for them by name/number. I've also linked each form name to its appropriate instant download page.

(Don't click the links in the checklists if you don't want the forms to download right away.)

q  Medicaid Application, Form 700, (answer questions as if your child was completing)
***
Other required forms/items (from the Verification Checklist):
□ Psychological (this is the report you got/will get from the specialist who gave/will give your child his/her diagnosis of Autism) **updated**
 Health Insurance Information Questionnaire, DMA 285 (I was unable to find a link for DMA 285: see tips below)
□ GA Dept of Human Services - Notice of Privacy Practices (one for each household member over age 18)

Other required/helpful documents:
 Copy of Child's Birth Certificate
 Copy of Insurance Card - Front and Back
 SSI Rejection Letter (see tips below for more info)
 Copy of Child's IEP/IFSP (if applicable)
 Therapy Notes?
Our case worker asked for Alexander's therapy notes to be sent with the new forms. He's in the Special Needs Public Preschool Program and he gets speech therapy there but he doesn't go to private therapy yet. So I just made copies of his school and ST progress reports and put those in as the notes. (I'm actually not quite sure if this is what they're looking for but it's all I have so we'll see.)
 Social History?
I additionally completed and submitted a Social History for Alexander because it was listed on the CHOA Deeming Waiver Info Checklist with instructions on how to write it. I don't actually know if this was necessary because it's not mentioned anywhere on the paperwork I got back from DFCS. (I'll try to find out from my caseworker if I did that work for nothing and update this post when I know.)

A few more tips:
**update** I don't think I made this clear before, although you may already know and if not you'll find out quickly: Your regular pediatrician will not be able to give you a diagnosis of Autism. Find yourself a Neurodevelopmental Pediatrician, Developmental Pediatrician, or Developmental Psychologist. These are the people who CAN make that call. (There may be other specialties that also have that "power" but I don't know what they are.)

- Swing by your local DFCS office to pick up the Medicaid application (they were in a rack by the door when I went). I included the link above in order to give you options but getting one from an office is really easier in the end. The application I got from the Barrow County DFCS office also contained the Health Insurance Information Questionaire, DMA 285 and the Notice of Privacy. You will need a Notice of Privacy signed by each household member over the age of 18 (so get extras if you need them). You also might want to try asking the rep at the desk if there is a "Katie Beckett Packet." The girl I asked didn't have a clue but maybe you'll get lucky and find all the paperwork I've listed laid out for you.

- Once you have your copy of the Medicaid application, write Katie Beckett/TEFRA at the top.

- To date or not to date? I've read in a couple of places online that you shouldn't date any of this paperwork before you turn it in. I then proceeded to forget and dated all my signatures. I haven't heard from my case worker if this will be a problem yet. I'll let you know what I find out. **update** Ok, what I found out: Didn't matter in my case. The caseworker never came back and said I needed to start over because I dated everything wrong, and we now officially have our APPROVAL (w00t!).

- The Verification Checklist (item #2 above) isn't really for you! It's part of the contact letter you'll receive from DFCS if you're missing things from your application. Not all the lines apply to all applicants. Here's an actual scan (with personal info cropped out) of the checklist they sent me after my initial application:

As you can see, I wasn't required to submit most of the things on that list.

- The instructions pages (for forms 706 and 6A) aren't for turning in, they're for instruction! Make sure you look them over carefully and use them to double check your work. It's just always good to read the instructions!

(Taken and paraphrased from CHOA Deeming Waiver Information.) The Katie Beckett Waiver is not based on your family's income (it's based on the assets of the child only). So, you first must prove that you do not qualify for the Supplemental Security Income (SSI) Disability - Medicaid program which is based on your family’s income. The first step is to apply for SSI through your nearest Social Security Office. You may call them at 1-800-772-1213 to begin the application. If your child receives SSI, and, thus, Medicaid, you are finished at this point, as Medicaid provides the same benefits as the Deeming Waiver). If your child does not receive SSI and Medicaid through this program, SSI will send you a denial letter. This denial letter becomes a part of your Deeming Waiver Application (see my scanned Verification Checklist above). Make sure you do not lose it!  - - - My case worker also said that if I hadn't applied for SSI yet that he would have to do a budget to find out if I was eligible for SSI. So it's my understanding that you can do the needed work through DFCS without calling SSI first. But, that's not how I did it so I can't recommend that way. The SSI application process was all over the phone; and I got my rejection letter fairly quickly.

- If you have an appointment coming up with your child's Developmental Pediatrician (or whatever specialist gave/will give you the diagnosis) take your Katie Beckett paperwork with you. Maybe your doc won't be quite this helpful but ours took the papers out of my hands and filled out most of the physcian's parts. I still had to take them to be signed by Alexander's pediatrician (PCP) but it doesn't really matter who fills them out. And let me tell you, the pediatrician was about to burst with relief when I presented the DMA-6(A) already filled out, with his signature lines highlighted. He said most regular pediatricians don't really know what to write on those forms (which is exactly what the Dev. Ped. said while she was filling them out).

- Related ^^^ If you didn't already know this (cuz I sure as heck didn't) you can schedule an appointment with your child's doctor just for paperwork. Our pediatrician's office calls it a consultation. I much preferred doing this and leaving my boys with a babysitter rather than trying to finagle signatures out of the doctor during a well-check or something. I assume most doctors prefer this as well.

**updated** Lastly, and yeah, probably leastly, It wouldn't be a bad idea to have a friend look over all the paperwork before you send it in to make sure you signed everywhere it says "Parent or Guardian," "Primary Care Giver," etc. I discovered it wasn't a big deal in the end but I did receive a letter from the Katie Beckett Review Nurse with a copy of a form I'd forgotten to sign. Which I promptly signed and put back in the mail.

**updated** See my Katie Beckett Continued post

***
I really hope this post will help someone out there who's trying to work through this process. Please remember that I'm not an expert and your experience may be quite different from mine. I don't even know if we're going to get approved based on what I've sent in and we might have to try again. (**updated** We got our approval!) I'm going to work at keeping a record going on this blog so that people can benefit from our example (both what to do and what not to do) as much as possible.

Good luck!

Thursday, January 19, 2012

"How High?"

For those of you who may not know, our 3 year old son was diagnosed with Autism at the beginning of January. You can read more about him and his development on our family blog.

A few days after Alexander's appointment at Marcus Autism Center I found and joined a website called MyAutismTeam.com. Everything is still pretty new but I'm really glad I found that site. Alexander is an anomaly in many ways but it's so nice to connect with other parents who can mostly relate to my current circumstances, whether emotionally or in the technical aspects. Right now I'm more focused on the practical parts. Because in fact, I find that my biggest anxiety-causer isn't Alexander at all; it's the red-tape. We want to get our little man all the help and services we can, and that requires paperwork.

And it requires cold-calls, and doctors' consultations, and IEP meetings, and waiting on hold with the insurance company (again). And being rerouted to yet another person at the insurance company who has no idea what I'm talking about or "no authority to make that call," (again). It means waiting in line at DFCS and "willingly" handing the state information that I, frankly, wish they didn't have. It requires, over time, filling out 57 different forms for 11 different offices, some private and some tax-funded, all with that same information! (Those numbers are guesses but I promise I'm not trying to exaggerate.)

Bureaucracy is the bane of my existence and has been most of my adult life. I'm sure I'm not alone in that. Alexander's pediatrician at least seemed to agree with me. I commented to him the other day that I'm working toward a gold medal in "Hoop Jumping" for the 2012 Olympics. He paused briefly in his scribbling under yet another "To Be Filled Out Only By Child's Primary Care Physician" heading. He glanced at the mountain of case files on his desk. (Alexander is his 4th patient to be diagnosed with Autism this month.) Then he gave an exhausted attempt at a chuckle and said, "That's actually a good joke."