SPD MOM

SPD MOM: New Autism Rules will Disqualify Many

2012-01-20T15:11:00.001-05:00

I sincerely hope if you are considering getting your child evaluated for any spectrum disorder, you have either already done so, or have an appointment to do so. Proposed changes in the DSM diagnostic manual, with regard to autism spectrum disorders are in the works. Change is a commin'. There will no longer be say a category for PPD-NOS, or Aspergers, but only a diagnosis of "autism." In other words, you either are, or you are not, and there are no gray areas which can lead to a similar diagnosis, as there are now. The diagnosis will require more check off's on the list, rather than say 6 out of 12 behaviors. In other words, the definition for an autism diagnosis will become much more narrower, and will affect (more than likely in an adverse way), the higher functioning, children. So what will this mean for those children? No diagnosis, no services, no insurance coverage for those services, and no support in the classroom with regard to an autism diagnosis. Both my children have aspergers as I have mentioned before. One was diagnosed young, and one not so young. Both have received services, which has changed their lives for the better. If they had not qualified, or were denied based on their high functioning ALONE, I am not sure where we would be, not only as a family, but how they are doing in society and school. Here is the "new proposed definition" of autism. To me, it looks very similar to the old standard, and my kids still would have gotten the diagnosis, BEFORE having any intervention. I am sure one of these reasons for changing the definition, is because so many children are being diagnosed these days, which is costing the insurance companies a fine penny I would bet. By narrowing the field, less money will need to be shelled out. I sincerely hope that children who have already been diagnosed and are receiving services would NOT be, nor forced to be, re-evaluated. Re-evaluation would run in the range of millions of people. Millions! If they were to be re-evaluated, and did not qualify for a diagnosis anymore BECAUSE the services were making a difference in their lives, then what happens? Do they no longer get help? No more social skills or OT, or speech? We aren't taking a cold here. One day you have a spectrum disorder, and one day you don't. My sons are not going to wake up one day and cry, "Hey Mom, guess what? I'm asperger free!" Sounds to me like someone, or SOMETHING is behind the DSM change. I'm sure it all boils down to money.... it always does. Today's New York times front page writes a great news article regarding this, as well as has helpful links to information you might need.

SPD MOM: Disability/Work Impairment tax write offs for all

2012-01-19T13:08:00.000-05:00

I have written about tax write off's before for kids on the spectrum, but I was wondering, what about other write off's for the disabled, not necessarily spectrum kids? What if you have a bad back, and you are say a person who lifts things for a living, like a construction, or factory worker, or child care person? You know, constantly lifting objects, kids, its part of your job right? And what if, in order to do your job, you had to see a chiropractor every week? Can you right that off? Apparently you can write that, as well as other things off. You must meet the disability, whether it is mental, or physical, or both. You can take a business expense directly, rather than be subjected to the 7.5% limit, as medical expenses are. This applies whether or not you are an employee, or self-employed. What about ramps for wheelchairs? Special glasses? Etc.?

Click on FOXBUSINESS to read this article, and to find out which IRS publication will detail these deductions further.

SPD MOM: The Top 10 SPD issues

2012-01-15T12:18:00.000-05:00

If you blog already, you know the value of Statcounter. Yes, I admit to collecting information about my readers, but its not what you think. I personally don't use the info for marketing purposes, etc.. Yes, I have ads on my site, but trust me, nobody clicks on them. I think I have made a measly $10 bucks from them, if that. Most ads add some colorful squares to the blog, and honestly, if someone wants to click because there is good info which applies, then so be it. So statcounter really helps me identify what people search for when it comes to SPD and aspergers, autism info. More specifically, when you type in a phrase say into google, like, "weighted pillows," or "spd temper tantrums," statcounter tells me where you live, like state, what phrase you typed into a search engine, what rank did my blog come up for you, etc. In other words, "how did YOU find ME?" What helps this blog the most, are keywords.. Keywords are the most searched phrases with regards to what you are looking for, and tells me if you found your info here on SPD MOM. I use these keywords to generate information for you, the reader. Information which I hope will be useful as well as helpful.

SO what are other people typing in their search engines with regards to spd/autism? Here are the top ten searches others want info about. They are in no particular order. These phrases send people to SPD MOM.

1. Medical Assistance loophole for Autism spectrum disorders (in other words, free MA healthcare for kids on the spectrum, and how to get it)

2. How to write an IEP

3. Constipation and SPD

4. SPD and sleep

5. How to make a weighted pillow

6. Temper tantrums with spd

7. Microwave popcorn and cancer

8. SPD Diet

9. Dying at home (I wrote about my mom doing this)

10. Poop charts

What other SPD/Spectrum issues are important to you?

SPD MOM: Stuff your child in a duffle bag when misbehaving...

2012-01-05T10:21:00.002-05:00

Well, I would never do that, but apparently someone did. A teacher specifically. Did you hear about this one? Read on.....

LOUISVILLE, Ky. -- The Kentucky mother of an autistic boy who says he was stuffed in a duffel bag for misbehaving in class has pulled her son out of school.

Sandra Baker said that although classes resumed Tuesday in their central Kentucky school district, she will home-school her 9-year-old son, Christopher.

Baker says she won't send Christopher back to Mercer County Intermediate School until the teacher responsible is fired and the staff is better trained to deal with children with developmental disabilities.

Baker says she saw her son in a bag Dec. 14. The case has spurred an online petition calling for the firing of school employees responsible.

The Mercer County schools interim superintendent did not immediately return a telephone call seeking comment.

(Source: Huffington Post online)

Really nice huh? It is not the first time this child has been treated this way at school. I cannot even fathom what I would do if that ever happened to my child. Jail time, here I come!

Sign the online petition to get this teacher help, at Change.org, She needs to take a course in education about autism, and end the abuse. Sure, she should be fired, but education and knowledge is more powerful than not. I would rather this individual learn the errors of her ways, and become a more compassionate human being because of it.

SPD MOM: Autism discrimination regarding Tom Hanks' Film

2012-01-04T14:15:00.000-05:00

Just when you think society has grown more accepting, more compassionate with children on the spectrum, our idiot brother and sisters decide to once again, show ignorance, lack of compassion, and flat out discrimination. One would hope that those "ignorants" would take avail of the incredible amount of education, and vetted knowledge available on the internet these days, and rather than throw stones, throw compassion, and understanding. It is not to be. "Extremely Loud, Incredibly Close," is a Tom Hanks movie, which in a nutshell deals with a 9 year old autistic child who lost his dad in 9/11. The plot mainly focuses on how this individual deals with his loss. The film has been panned and praised, but apparently the real outrage is regarding the, "behaviors" of the lead child actor. More specifically, autistic behaviors, and how they are annoying, irritating, etc.

Onc such comment was this spoken by AP movie writer David Germain:

"Newcomer Thomas Horn, the 13-year-old star who was cast after the filmmakers saw him on a "Jeopardy!" kids episode, is a mixed bag, holding his own among the adult actors but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive). You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating." (source: Autismkey.com)

Another review from IMDB looked like this:

“Top notch talents put themselves at the service of this jarring tale lead by Thomas Horn a young actor, talented I’m sure, but here, he is utterly unpleasant. A precious child with a jarring voice that should be stopped, now!”(Source: Autismkey.com)

Nice huh? I guess apparently there were others on the internet making such comments as well. The sad thing is, we get it. Yes, we know our child or children on the spectrum can be irritating to some, etc.. but THIS IS WHO THEY ARE. They cannot help their unique habits, communicative ways, etc. and they should not be picked on because of them. Would Mr. Germain would become frustrated with an Alzheimers individual who could not remember Mr. Germains' name, or a leg amputee who had difficulty walking? Hmmm. Well, you know I wouldn't want a confused individual such as Mr. Germain to spend two hours with any child on the spectrum, be it on the big screen or in real life. He clearly is not the man up to the task... and honestly, our SPD/spectrum kiddos are much too special to be put in the hands of ignorance.

If you have not seen the trailer, here it is.

SPD MOM: How to write off Gluten Free diets and Special Need Expenses..

2011-12-21T10:42:00.000-05:00

Although I should be thinking about Christmas, Santa Claus, ho ho ho and mistletoe, I am not. I am thinking about my tax return for 2012, and wondering HOW in the world I can possibly "write off" the expenses of my kiddos. Well, the reality for some of us will be, "you can't." It is not because we do not have the expenses, lord knows we do, but rather many of us do not exceed the standard deduction on the schedule A. I gave up doing our taxes years ago, once my hubbys' self-employment paperwork became to tricky to do on my own, (thanks to our beloved IRS). But, our accountant does not always realize our particular family situations at the moment as it can change frequently. So, as parents, it is our job to educate ourselves as to HOW to save some money on our tax return.. or at least give our accountants the info to do the work we PAY them to do for us. Granted, if you have a special needs child, you will have additional expenses. Can you deduct a gluten free diet? Yes. Can you deduct costs of special instruction? Yes. Can you deduct diapers if related to Autism? Yes. Regina Levy, a CPA article writer for TACA (talk about curing autism) has some excellent tax saving strategies if you have had special need expenses throughout the year. Since many of these expenses are considered medical, you will be subjected to the 7.5% limited Adjusted gross income. So is it worth the time to crunch the numbers? Well, let's look at an example. Say your gross adjusted income is $45,000.00. Take that number and multiply it by 7.5%, which equals $3375.00. Your special needs medical expenses came to $5000.00. You will only be able to deduct $1625.00 (5000-3375=1625.00). Now, the standard schedule A deduction for filing married with spouse is $11,900 an increase in 2012 per Liberty Tax Service. I would not forget about trying to write off special camps, sensory products, etc. Personally for me, I can absolutely justify the medical need for them as can many others, but I cannot always meet or beat the standard deduction. And as always, be sure you contact a professional CPA, or IRS website to make sure of what, if any, new tax credits or deductions apply.

Phew! Now, back to finding the meaning of Christmas......

SPD MOM: IEP Meetings.... how to get what you want!

2011-12-15T13:18:00.000-05:00

Well, I just came back from one. It was a breeze, compared to the first IEP meeting, which was the first IEP for this child of mine, our older one. Every year my son gets a new Special Ed. teacher. Let's just say that this year is not the brightest bulb in the box. Nice, but not too, "with it." This is the same individual we had non-compliance with. Anyway, let's just say I ran the meeting. Yep, that's right, me, the parent. Having complained before regarding non-compliance helped this renewal meeting of course,' no school wants the threat of the State Board of Ed on their backs. It doesn't look good. Since the schools receive funding for Special Ed services, it really doesn't look good when your collecting taxpayer money, but not providing. GPO Access.com is a federal website which defines all these wonderful special ed. terms, from eligibility, to least restrictive environment, etc. Definitely worth keeping in your bookmarks section. Okay, so, how do you get what you want on your childs' IEP? Here is what I did:

1. Go in prepared. If the school gave you a draft of the IEP, that is not illegal, but never assume it is set in stone. The IEP is suppossed to be a colaborative affair between the school and the parent. Read the draft, highlight your issues, make sure the goals are clear, measureable, and obtainable for your child. Remember, YOU know your child best.

2. If there is a sentence or two in the evaluation, such as a "not so nice opinion," of your child, ask to have it removed. These records will follow your child, and just because one teacher feels whatever about your child, like "raises hand too much," or "too anxious," etc, DOES NOT make it true. Now, if your child is anxious, say at test time, and really cannot handle the pressure, then it is an advantage to you to use these observations towards a goal, if needed. Maybe it is noted your child is anxious at test time, and also has SPD noise issues. You feel perhaps they should take the test in another room, away from distration, but the school is not sure. You can use their observations to bolster your desire for accomdation. Does that make sense?

3. Know your rights! Before you go into the meeting, make sure you are aware of your rights which govern the meeting. There is no time limit for the IEP meeting. Do not allow yourself to feel rushed, especially if you are told there is another meeting 45 minutes after yours. That is what happened to me, and I said, "Well, I am not signing anything until I agree with what is written." And I didn't. You can ask to meet again with the Special Ed. teacher, request another meeting, have them continue to work on the draft until it warrents your signature. After a second draft is written, and sent home to you, correct it if needed, and send it back. Even if you do not sign the IEP, services will continue from the previous IEP in place, until the expiration date, usually 10 days after or so. It is in the schools' best interest to get it completed, and signed by you. They do not want to have to go to mediation, which is the next step, if the parties just CANNOT agree on the contract. You may request this, by checking the box on the IEP, which you are basically saying, "nope, no good, lets sit down and chat about this some more."

4. Arrive with goals, and modifications on paper! At our meeting, I noticed two services were taken away from our sons' original IEP, without any backup stating he had met the goals. One of them was removing him from social skills group. I requested it be put back on the IEP, and he continue. I have no idea why the Sp. Ed. teacher removed him, and really, she had no reason either. The second, was inferential thinking. He had been doing well with the support services, and we both agreed it could be taken off.

5. Make sure everything is crystal clear! If there are any words which could be subjectively interpreted, such as, "He will progress." The word progress, for example, could mean anything depending on HOW and WHO is interpreting it. Words such as these need to be defined more specifically. Another one of these words is, "proficient." Do you mean he scores a 3 out of 3 on the rubric? Or is proficient 2 out of 2 for a total of 10 times? DEFINE IT. When you sign that document, there should be absolutely no misinterpretation of anything, or confusion. If you find yourself asking this question, "I wonder if they meant this?" or "What does that mean?" Then the IEP is NOT written well, nor is it crystal clear to YOU!

6. Stay focused, sane, and strong. These meetings can raise ones' blood pressure faster than I don't know what. At least they do for me. I find having a few shots of tecquilla before I arrive is very helpful. Just kidding! I hate that stuff. No, I meant to say green tea... and a quick meditation. Bring a friend or hubby, partner for support if needed. And as always, speak up. You know your child the best!

For more tips to get you ready to go into battle, Kids Together, Inc., has some similar, and other helpful suggestions.

SPD MOM: Santa gets sensitive for SPD/Spectrum kids! Yippie...

2011-12-07T14:59:00.003-05:00

By Katie Moisse/ABC News Website

Dec 5, 2011 3:08pm

"A trip to the mall to sit on Santa’s knee is a special event for families, but the holiday hustle and bustle can be overwhelming for kids with autism. That’s why Northtown Mall in Blaine, Minn., opened its doors early Sunday morning for some low-key “sensitive Santa” time.

“A lot of children with autism aren’t able to have the experience of seeing Santa,” said Northtown’s marketing director Linda Sell, describing the typical bright lights, loud music and long line. “This is our way of helping.” The mall dimmed the lights and lowered the music volume to make autistic children more comfortable. And instead of waiting in line, kids colored or walked around with their families. “It’s something very small on our end but it means so much to families, ” said Sell.

An illustrated pamphlet showed families what to expect during their visit — a helpful aid for kids with autism who often rely on routines. And a form filled out by parents in advance gave Sensitive Santa the scoop on their wish lists. “Its’ such a wonderful event,” said Sell. “It’s heartwarming to see the joy in the kids’ faces, and in the parents.”

The U.S. Centers for Disease Control and Prevention estimates that one in 10 children is on the autism spectrum. The event is emotional for parents, some of whom thought they’d never see their kids on Santa’s knee. “You have things you look forward to with your child,” mom Gena Elverhoy told ABC News affiliate KSTP with a shaky voice. “It’s different, this way, to be able to still have these experiences that you want to have.” More than 50 kids of all ages attended this year’s event. The mall spreads the word by sending flyers to schools and therapy centers. “We will continue to do it because obviously there’s a huge demand,” said Sell.

Dr. Max Wiznitzer, a neurologist specializing in autism at University Hospitals Case Medical Center in Cleveland, said parents want their children to have the same opportunities as their peers.

“A visit with Santa is one of those things you expect to happen,” he said. “And why should the special needs population not have it?” Some movie theaters now have special screenings for autistic kids. And Walt Disney World offers special passes that allow them to skip long waits in crowded lines.

“This is our culture recognizing that if the kids can’t fit into the template, the template has to fit the kids,” said Wiznitzer. “It’s happening more and more.”

Great idea!!!!! You can find some sensitive Santa by searching "Sensitive Santa for autistic kids." A listing of different malls with links shows up.

SPD MOM: How to make Non Cancer causing Popcorn

2011-12-06T13:48:00.001-05:00

Okay, after checking Statcounter, it looks as though a tremendous amount of people are searching for info on microwave popcorn bags and their potential cancer causing properties. Many people landed here, where I wrote about it, who knows when.. But anyway, there is a sure way to avoid all those carcinogens involving that gross BHT and crap, inside every little wonderful bag of microwave popcorn.. unless you buy organic, which, read the back of the package, may or may not have it. So, in our family, we have been making it on the stove. I can personally vouch for the fact that electric stoves STINK at making popcorn, vs. gas stoves. No, its not me, its the stove. Second, making your own in the microwave is nice, but messy, or greasy, or whatever. So, let us go back, way back to the 70's and 1984. This is what we are NOW the proud owners of... Yep, that it is correct. A West Bend, 1984 ButterMatic II! Not I, but II! It is fantastic! Now, I will date myself by saying that yes, we had one of these, back when I was in Jr. High.. and it was fantastic! The price at the thrift store was even better: $5.00. Ebay has these for sale, although they are a bit more pricey than mine. So, you add oil, real popcorn, and plug it in. My kids had a blast watching it pop. Use the top for the bowl, and there it is. Cheap, easy, healthy, and did I happen to mention cheap? No more preservatives, etc.. And I don't want to hear anyone claiming that they ain't got room to store this sucker. I think that is why everyone ditched theirs in the first place.. well, that and "we gotta have it faster, " or " I don't have the patience for this."( Life cannot be all about convenience, because that can lead to the demise of society!) Another great find, as I am sick to death of crappy coffee makers, Made in China, which seem to have chronic electrical issues, is the old fashion percolator. Specifically, the USA made, 1968 West Bend Aluminum 9 cup maker. Now I am really dating myself. No, I don't remember my parents having that.. and yes, it was a tad before I was born. I found this in the same thrift store for a whopping $6.00. The cost to purchase a new Hamilton Percolator? Try $45.00! Buy one new you say? NO WAY! There is a reason these suckers have lasted and have stood the test of time.. its called QUALITY, and WAS USA MADE, and those two issues are sorely lacking these days. That first pot o' coffee from that 1968 West Bend was so hot, I just about burned my tongue. Fantastic! You know money is tight for almost everyone these days, well, except 1% (ha ha), and so it is a great idea to be mindful as to WHERE, and HOW you spend your Christmas dollars. This is a great time of the year to teach our young ones about the dollar, its value, how to save, how to give, and just plain how to be grateful. Personally am no longer interested in buying new crap... most of it is crap, that does not last worth a darn.. if you have a lot of money, you can buy upscale new crap that lasts a bit longer than lower priced crap. And believe it or not, there are still objects made in the USA, I cannot vouch for them, but STILL MADE IN THE USA is a nice site which has names, links and descriptions of the websites.

This sucker makes the BEST, HOT COFFEE!

SPD MOM: What is Non-Compliance with an IEP??

2011-11-18T15:38:00.000-05:00

Non-complaince with regard to an IEP, is when the school, who agreed to this LEGAL document, does not follow the contract. Whether not providing services, or all services, or only some, or none at all, or whatever, that is non-compliance. And it does not have to be with regard to services, it could be not allowing your son/daughter a five minute break from writing, (which would be on the IEP), or letting them use a squishy on their pencil, if they get hand tired from writing. What can you do, or should you do, if your school is not in compliance? Well, your going to get angry perhaps, I did last week, and whip off an email to SOMEONE.. but take a deep breath first. I was up this past Sunday at 5am, writing MY email. How did I know there was non-compliance? Well, a low graded paper for one thing, and a few well placed questions to my son. Like, "WHAT DO YOU MEAN YOU HAVE NOT SEEN THE SPECIAL ED TEACHER SINCE THE SCHOOL YEAR STARTED?" Well, actually, that was yelling. So, after doing some research online at Wright's Law, and then at My state's education site, oh boy, my son's school really dropped the ball. So, you have an option of filling an official complaint with your State's Board of Education, and/or writing to your school Principal, which I did. My letter stated that the school was in non-compliance of the IEP, it listed which parts of the IEP were not in compliance, and it asked why the services were not being rendered, as well nicely demanding a reply. Well, the next day, Monday morning, I received a phone call from the Principal, asking to set up a meeting within the next day or two with him, the Special Ed teacher, and counselor. My son came to the meeting, which ended up being in his favor. Basically, I got an apology, was given excuses for "being too busy" to remember, etc.. And there was some hint of discussion about "does he need this," etc. I made it clear that this was NOT an IEP review meeting, and we were not going to discuss changes, rather a plan for making sure the IEP was not only being followed, but also, how was I going to know? Of course', we need a paper trail, so, I suggested one. The meeting wrapped up, and just for good measure, I mentioned how, I was glad I didn't have to file a non-compliance complaint with the state. I also said, nicely, that I would hate to have to be at another one of these meetings again, for the same reason. And guess what? My son has been getting his services, since this meeting. In FACT, the school has been bending over backward. So, speak up if the IEP is not in compliance. Goliath might be huge, but David has the muscle.

SPD MOM: Christmas ideas for the spectrum kids..??

2011-11-06T12:52:00.000-05:00

So I started the Christmas shopping already..I usually do at this time of year, like many others. Shopping early for me gives me better peace of mind, and when the crunch time comes, I don't have to be part of it. Our Christmas' have gotten better, meaning more SPD free... so this one should be great. Well, what am I saying, they are all great, right?Anyway, LEGOS are at the top of the list again this year, but this time, our 5 year old is asking for them! And this is a big deal, since he has finally found a toy he really likes to play with, rather than light switches, tupperware, etc.. Although Thomas the tank Engine was another he liked. Anyway, being it will be another frugal Christmas for us, I thought perhaps I'd share a great place to buy legos, if you are planning to shop for them. Ummmm, Lego.com is a great site. They are the real lego people, you know, the ones who make the product. Their prices, I found, were the cheapest, well, they set the price really, and then maybe stores like Target and Walmart discount them.. or maybe not. I bought a lego set there, (Star Wars), of course, which was cheaper than purchasing at a big box. Toys r Us stinks, in my view. They claim exclusivity with some Lego sets, which is simply not true, then charge more for them. If you sign up at Lego.com for their VIP rewards, you will get a point for every dollar you spend. Sometimes you'll receive double points, it depends on their promo. You can use the points for discounts on another purchase. I did, and another set I purchased for Christmas, the Star Wars Lego Landspeeder ended up only costing me $20.00 which included my sales tax and shipping. So, I saved only four bucks, I know.. but four is better than zero! My kids love the legos, they are great for fine motor, and creativity, and sure beat the computer, or at least to me. Lego shipping was only $4.99, even though the box was large. They have great customer service, and ease of ordering. Oh, and they also have the hard to find kits too, at REGULAR prices, not the price gouging on other sites.

SPD MOM: When does Autism/SPD become really boring????

2011-10-28T15:35:00.000-04:00

So I have a slight problem. My blog is becoming really really boring, or at least I think what I am writing about is. I have never been one to follow the "styles" or "tweets". I honestly have never used twitter, nor do I have that capability on my phone. I don't watch dancing with the stars, and had no idea Apple came out with a new phone, although I did read about Steve Jobs... interested more in his cancer than the phone. I don't have internet access on my phone, nor take pictures on it. I don't own a laptop, iphone, ipod.. WHATEVER STARTS WITH "i", I don't have, nor have an interest in getting. I still love to mail letters, and actually speak with a human on the phone. AND I could care LESS that Jlow (whatever), was crying on stage, (it was the headliner on the morning news, and the tv was not turned off in time.. which is the only way I knew about it). Nope, these things don't make me special, but I think they make me really boring.. not so much to myself, but "out there." You know, in society.... in this bloggingsphereo dealeo. So, the problem is not so much being unplugged, I can tell you all about what is going on in the "real" world, but staying on topic of what SPD MOM is supposed to be all about. It is not that I'm not interested in the topic I write about, but the topic, or the troubles and horrors and stresses of the topic are not really happening to us as much as they were, when I first started writing. Hence, I run out of things to say, so I don't write. I guess what I mean is the stories I could tell, things that happen in my day with the boys, seems so trivial.... not really all that important, not all consuming as they were. Maybe life is good.. maybe this blog has reached its course.' I see there is a SPD blog network, and I feel that there is a lot of info out there to help others... why add mine to the list? Nobody really wrote about SPD a few years ago when I started... there were only a handful of Mom's writing.. and now there are a lot.. which is good I guess.. But for me, it seems "done." And lets face it, I don't have a lot of followers, and rarely anyone comments.. which I honestly am okay with that... but one can only speak to the wall for so long, until one day, like today, you realize you ARE talking to the wall... and maybe you ought to stop? (Besides,
I look awful in white, (straight-jacket that is...).

SPD MOM: SPD goes to school... ALL DAY, and functions...

2011-10-04T15:30:00.000-04:00

Well, I wrote about possibly putting Tommy in school all day, that is a morning kindergarten and afternoon special ed class...well, we went ahead and decided to go for it. After speaking with his special ed teacher, asking how his IEP issues were coming along, and talking to the kindergarten teacher.. well, it was a no brainer. I kind-of think, at least for Tom, he was getting really bored.. Bored with special ed, at least what he was not learning, and looking for that extra challenge.. I was not sure he would be able to keep it together, like sensory wise, or behavior, or something to that nature, but I was wrong. HOWEVER, it took the behavior therapy, (ie wraparound services), it took a year of special preschool education to GET HIM to this point in his life, where he can not only function (ie sensory wise), but can COMMUNICATE vocally, like "things are too loud", "this itches", "Mom, cut the tags off," etc... but that took along time to get here. I know a lot of people hold their kids back from kindergarten, and in fact, the NY TIMES did a huge article on "red shirting," you know, holding your child back a year for whatever reason. But I feel, depending on the specific child, some children really ought to go, or at least specifically, my guy. Going to school has really brought him full circle. He CAN do it. Not only is he mentally tired from keeping it all together, but he is cognitively tired, challenged, interested in learning, his brain is occupied so there seems to be less 'static' which seems to cause the out of sync behaviors. He seems more tempered, calm, focused, etc.. And the bottom line? Less bored. I think if I could go back in time and change the decisions I made as a parent with an SPD kid, it would be this: I wish I would have gotten the support of behavior therapy earlier. I wish I would have sought it out.. or knew about it sooner, or something. My hubby and I frequently speak about "what was" and how far our son has come. There are times we cannot believe the moments we went through, how the past behaviors and our lives back then were so different, as was our marriage. Having spd kids can strain a relationship.. it just does. It changes the peace in the home, and in the heart.. but, as I am typing this right now, I do believe it gets better.... so much better. Everyone has a different path as a parent as far as how they will handle an SPD child, but with hard work, diligence and perhaps a pinch of good luck... there can be results.

SPD MOM: MRI Results show brain malformation.. but

2011-09-29T09:24:00.000-04:00

Okay, got the MRI results back, and spoke with the Neurologist. No tubers, suggesting no Tuberous Sclerosis on the brain, but, as a final diagnosis for TS, the eye test to check for harmatomas. If the eye test is fine.. no TS diagnosis, and the skin ash marks are just that.... discoloration. So that appointment is not until November. What was found on the MRI was something else; a Chiari One Malformation.

The brain pushes down into the spinal column, and the cerebral fluid does not flow well, which can cause a variety of symptoms. Tom has a type I, even though that is usually seen in an adult brain. See that little dip in the first picture with the arrow? Your brain should not dip down. Tom's dip is 12mm, which is about a 1/2 inch. The concern is compression on the brain, as well as a fluid filled cyst, called

"syrinx," which is located in the spinal cord and can continue to grow and impair the spinal column. It doesn't look as though he has any cysts, although we have only looked at the cervical part of the cord. Another MRI would be needed to see the thoracic and lumber areas. After much conversing with the Neuro and his Pediatrician, we are electing not to do another sedated MRI, nor brain surgery, because he is not really having any symptoms... and the word of the day is... yet? This is uncharted territory for us.. and Tom having sensory issues makes it difficult to see if his tripping, falling is due to SPD or Chari. So as of now, we wait and see if he develops symptoms which would warrant another MRI and possible surgery. The surgery removes the bone to allow for the brain to have more room, and to decompress. SO, that is what we know for now. I am not surprised with the malformation. His head always was developing funny growing up.. particularly the first few months... The neuro does not feel this is associated in any way with his SPD or Asperger diagnosis. So that is that I guess. The sedation was not so bad.. he was out for a while after the MRI, but a good scan was able to be obtained because he was out. And the drugs wore off pretty quickly.. Usually they say about 24 hours, but Tom was back to his ole' self I would say 6 hours after drugs initially being given. So I guess now we watch, and wait...

SPD MOM: Early kindergarten, MRI and Forgetfulness???

2011-09-22T10:26:00.000-04:00

Well, been really busy these past few weeks.. are not we all? Tom's MRI is this Saturday... looking forward to seeing that big head of his under a microscope and getting a clearer picture of what we are dealing with. His other two tests for TS came back fine, no issue with the cardio except for two heart mummers which I am told is normal. Tom started a private kindergarten today.. well, just a "test" to see if its a good fit. He has become very bored with his special Ed preschool... as they are not really focusing on more "advanced" cognitive skills, like counting, adding, etc.. which is not their purpose anyway. He was not able to go to public kindergarten this year because he missed the age cut off by 2 months, and our district WILL NOT make an exception, even if the child is say brighter than his peers. But the fact remains that he is bored.. which is not a good thing when you are at school. Oh sure, we have many support worksheets at home, counting money books, etc. but, he really needs that extra umph that only kindergarten can provide. So, after calling his preschool teacher yesterday, and seeing if she felt it was a good idea..(like he is capable behavior-wise), we decided to give it a try this morning. So maybe he will end up going 1/2 day kindergarten am, then special ed preschool pm, as I would like for him to continue to get his speech therapy, etc.. He has made much progress since being in the early intervention program. I know not many people look forward to taking your child to an mri, but lately there has been some concerns about Tom's memory. Like last night, we read a money book.. you know, learning the coins, and how to count them up.. We had never worked on this before, and Tom shouted out correct answers like gang busters.. I actually had a hard time believing he could do it.. But that is how he is.. self taught a lot, and gets concepts easily, especially when it comes to numbers. ANYWAY, this morning, he wanted to try a different book counting money, same difficulty, and it was as if I had a completely different child on my hands... he couldn't remember ANYTHING about money.. his counting was wrong, identifying the coins, it was as if we were starting all over. Now, I know memory loss and forgetfulness is common, but this happens a lot. Like one day he can add 9+8, and the next day, has no clue how to do it. WHAT IS THAT???? Is it short term memory loss? When we learn say a letter, or a number, or how to do something.. doesn't that stay in our brains? I just don't get it. Is that maybe a cognitive functioning impairment? Anyone else have this happen? Anyone have an answer?

SPD MOM: Drug that child for his MRI... please???

2011-09-07T12:49:00.001-04:00

And so (we never start a sentence with AND), we have started down our Tuberous Sclerosis road with tests. First was the renal ultrasound, and next is the MRI.. That would be the MRI with drugs... IV sedate. Thank you CHOP! (Children's Hospital of Philly). Well they sedate all children under 10.. You know, that darn inability to sit still! But there is no point in getting an MRI, if you cannot read the MRI, due to movement. Our oldest ticked so badly through his open MRI, (what a joke), that the machine actually aborted the mission. And no, kids with face tic disorders CANNOT control their movement, no matter how much you tell them to keep still, (thank you very much). But who doesn't know that? Should have driven into the city for that one. NO MORE "sub-stations" for tests for my guys. Well anyway.. the MRI will be interesting. We are looking for tubers on the brain.. small tumors, etc.. Not sure what, or if we will find anything. Lucky for us the renal came back negative.. so kidneys and bladder are great.. I am not so positive about the brain. The one thing that showed up on the limited scan of our oldest, was "thinning of the corpus callosum." This can cause similar symptoms of sensory issues and autism. I wish we had gotten a complete scan of him. If down the road it is deemed that Tom has tuberous sclerosis, I had been asked by the neurologist to do genetic testing on myself and hubby.. But we will see. Next stop is cardio, for an ECHO and consult.. again, looking for tubers, tumors, etc.. So our youngest will miss some school these days, for these tests and consult... but oh well. As usual, I am grateful for the science... and a chance to possibly rule out the causes of his white ash patches. But, I am not sure they will be explained in any other way.. which is always and again in the back of my mind.

SPD MOM: Could Tuberous Sclerosis be causing Autism in child?

2011-08-14T11:12:00.001-04:00

Life is one big journey, and we find ourselves on another side journey in our household today. That journey is called, "The quest for Tuberous Sclerosis." It all started out with a white patch that looks like the one above... found on our youngest. He has had a patch like this one, on his left thigh, except larger than the one in the photo, since he was about one in a half years old. I never thought much of it.. rather it felt like maybe it was a birthmark.. so.. that was that, or so I thought.. These past few months, our son has developed more of them.. (he is almost 5 now), same leafy shape, on his face and other leg. The marks never get red out in the sun, and never change color either. After consulting with his Pediatrician, who thought it might be some fungus, he sent us along to a Dermatologist.. who said, "no, not fungus, he is too young for that.. but possible Tuberous Sclerosis, given his medical and family histories." So what is TSC? It is a genetic disorder that causes tumors in the brain, and possibly other main organ areas. Symptoms can include a variety of things, such as; cognitive problems, behavior issues, seizures, skin abnormalities, etc.. Massachusetts General Hospital does a great job with info, as well as photos of the skin abnormalities, which is what led me to take my son on this journey. There also seems to be a connection between children diagnosed with Autism, and TSC, as noted by the Tuberous Sclerosis Alliance website. The National Institute of Health also documents this as well, with percentages of affected children too. Now, my kids do not have epilepsy, but they do have staring spells, where they gaze off into nowhere for about 5-10 seconds. These ARE considered seizures, just in case your child is having them as well. They are important.. and you can read about the differences at this neurology website. So what is next for us? Well, kind-of a lot really.. First up is neurologist, MRI, then renal ultrasound, echocardiogram, and then a trip to the metabolic geneticist. Good thing Tommy is not in all day school yet.. So, we take it in stride.. Ummm... it is a bit of a relief to me in a weird way... finally getting to understand why Tom has the spots, the autism, etc.. My mom passed away from a brain astrocytoma 2 years ago, and Cancer.net writes that there is a genetic syndrome involved with those developing a brain astrocytoma, actually there are a few, one being TSC. The Europe Cancer Institute speaks of the genetic reasons of astrocytomas in adults. Again, there is the TSC. I would be remiss if I ignored the Grandmother link in all of this.

SOOOOOOOO... Here we go.....

SPD MOM: Giving your SPD child a preservative free life...

2011-08-04T16:57:00.002-04:00

Milky Way Farm, PA

Eating a chemical form of butane cannot be good for the SPD/Autistic brain..it ain't good for anybody. And yet this preservative is in everything from crackers, (think saltines), to microwave popcorn. Its name is simply TBHQ... Check your pantry... I bet you have some infact. Natural News.com has an excellent article about this TBHQ.. and where you will find it. It has been suggested that this preservative may aggravate ADHD as well.. READ THE ARTICLE.. Anything that extend the shelf life of food cannot be the best thing. I am normally not a crusade kind of person. There are things that I get passionate about, for say a day or two, then typically I move on to the next thing that makes me crazy... But, this time.. its different. And its really only different because changing my diet has honestly changed my health. I have seen it number one with my husband.. We were able to avoid high cholesterol meeds BECAUSE he changed his diet.. dropped his numbers by 100.. I guess I am doing a science experiment on my boys.. but I think its more that I am tired of putting chemical crap in the bod. Over the winter I felt not so great, had gained weight, no energy etc.. Had test on test... maybe thyroid, no its not.. its all in my head, etc... And that is when I decided to start on an herbal med/organic food diet, (or at least as organic as I could afford...) In other words, back to the basic foods that have always been available on this planet since forever, before the manufacturers decided to tweak them for their own profitability. Now there is no way we can shop at Whole Foods, or even afford Trader Joe's for that matter.. But lucky for us, there is a local farm, called Milky Way Farm. They make their own milk, sell their own eggs, produce and ice cream.. No preservatives in any of that stuff. The produce is cheap cheap cheap.. 5 tomatoes for $1.00, 10 cent peppers, $3.00 watermelons, you get the drift. And their milk is unbelievable. When is the last time you can remember washing dirt off of a green pepper, unless it was your own? Or having the sweet juice of a seedless watermelon drip down your wrist. I am not talking about the crappy watermelons grown in China, shipped here to ripen in a container, then tasting like nothing after you have taken the time to chop it up. Not that stuff. No, the good stuff.. like we had when we were kids.. for me, that would be in the 70's.. (and yes, I don't mind dating myself). So giving my kids these foods, as well as banning the crap, makes us all feel better.. I know its hard, especially when they are picky eaters, but it can be done.. It just takes a lot of label reading.. And yes, you may have to give up your favorite low fat ice cream, the one with carageenan... but I would recommend giving it a try, at least for a week or two, and see how the kids do.. mentally and physically. Lots of parents try the casein free, or gluten free diets, but I wonder how many try the preservative free?

SPD MOM: Are you buying cancer causing foods today??

2011-07-26T11:45:00.000-04:00

http://www.amazon.com/This-That-Worst-Foods-America/dp/1605294616

Aspartame, BHA and BHT, Blue #1 and Blue #2, Carrageenan, casein, corn syrup, maltodextrin, red #3 dye, and lecithin... Heard of them? These are just some of the many additives in almost all food products today, and the chances are pretty great that you or your SPD/Autistic child is eating this stuff as we speak. And why should you care at all? I mean are not we all going to die at some point? And since 1 in 4 of us are going to die of cancer per the American Cancer Society:

"How Many People Are Expected to Die of Cancer This Year?

In 2011, about 571,950 Americans are expected to die of cancer, more than 1,500 people a day. Cancer is the second most com mon cause of death in the US, exceeded only by heart disease. In the US, cancer accounts for nearly 1 of every 4 deaths."

should we care? In reality, is there anything we can do about it? Does what my child eat, particularly a spectrum child matter, or for that matter, does it matter? Well, out of those above additives I mentioned, four have been shown to cause cancer in animal studies: aspartame, BHA, BHT, Blue #1 and #2, and Carrageenan. There are other additives I have not mentioned, that are cancer causing as well. The Department of Human Health and Services classifies the BHA preservative as, 'reasonably anticipated to be a human carcinogen." In other words, it is.. but we don't want to "talk" about it now... Now, the picture of the book I have above, is a masterpiece book, and there are three of them currently available. There is a restaurant guide, supermarket guide and worst foods in america guide. I stumbled upon this, thanks to our aspie son, who loves to read facts.. numbers, whatever.. He checked out all three at the library, and I have not been able to put them down. They are a MUST read, if you know, or think you know, or if you DON'T know what the hell your putting in your families mouths. Now, I am very guilty of the above. I thought we were eating well, low carb, low fat, low sugar.. (meaning REAL sugar, just less of it). But after reading these books and going to the grocery store today... and PUTTING BACK some things I always buy, I was surprised. Now, I had started looking at the back of packages awhile ago, and have a younger brother who is always alerting me of the perils of additives. But being always mentally engaged, I never took the time to learn about what these additives were. I knew however, when I was a teen, that diet soda was not really good for you, based on the aspartame. But, that is all I knew. Call me an educated, choosing-to-be-naive-mom. Just today, my favorite low fat yogurt, the one with the fruit on the bottom, (Giant Supermarket brand),added over 5 MORE ingredients... maltodextrin, (a caloric sweetener, thickening agent, has the potential to raise blood glucose and insulin levels), and high fructose corn syrup were the two the mostly caught my eye. Why not just real sugar? And why the thickener? Do I have too much time on my hands? Well, maybe.. but the unnatural chemicals we put in our body.. how DO we know what sort of effect they have on the body and brain? And are kids on the spectrum more susceptible to the effects of additives than others, due to their brain structures? Kids and parents with kids on the spectrum have enough to worry about.. I know that.. and perhaps since my mom died of brain cancer, I may be a bit more sensitive about a cancer topic than the norm, but for those of us looking for a healthier lifestyle for ourselves and our children... starting with what goes into our body, which GIVES us life, is a good place to start. I know, I know, "life is short.. I'm gonna' eat what I want." Well, do that, if it truly makes you happy.. I agree, life is short. But me? I have seen what cancer does to the human body... I have seen the black vinyl body bag zip my Mother up way too soon... and it is something that I would not wish upon anybody.....

SPD MOM: "Crystal Children"... Do you have one??

2011-07-21T16:27:00.000-04:00

Many years ago, when we lived in the mountains in Upstate NY, a good friend of ours lost her husband to cancer. Lung cancer, and guess what? He never smoked a day in his life. Anyway, our first born was about 2 then, and we were already seeing spectrum issues, but didn't know that was what it was. We just thought he was a wise ole' child. Now this friend, was very special to me. Not only because she was one of my only friends, but because she had this aura about her. It was sad, due to the death of course', but very at peace... energetic in a non-hyper way. She was the type of person never to judge, and believed in a different kind of spirituality, not one you find in your local church. I admired her for following her own belief system.. ANYWAY, she met our son. I had many concerns for him at the time... and she said, "maybe he is a crystal child?" So, I googled that, years ago, and honestly thought it was a little, 'out there.' Fast forward 8 years and another autistic child later, and I don't feel its crazy now. Science cannot really explain all the unique traits of a spectrum child.. They do seem, and I have written in past posts, to have a 7th sense. I cannot explain the big, deep eyes, and their ability to relate with nature in a way that's hard to explain. I have seen other children who do look like mine... I mean many people have.. but this is different.. These children have this certain, 'look' about them... and its in the eyes... and the mannerisms. Forgetting about this idea of crystal children for a moment, as I believe autism is autism, but there have been many times when I have felt my kids are wise before their time... like either they have been here before.. whatever.. Don't know if I believe in angels or would even call my kids that..... (as crystal children maybe)... but they are something that can be hard to explain at times...

Here is a quote from the very first line in the book.....

Introduction:

Who are the Crystal Children?

The first thing you notice about Crystal Children (whom I'll also refer to as "Crystals") is their eyes - large, penetrating, and wise beyond their years. Their eyes lock upon yours hypnotically, while your soul is laid bare for these children to truly see.

Think your child might be a crystal child? Click this website: bibliotecapleyades.net.

You may find more questions than answers.

SPD MOM: Disturbing Asperger/SPD behavior?

2011-07-20T09:33:00.000-04:00

Another thing I noticed, or have noticed about asperger/spd behavior, is the seemingly lack of good judgement I have seen with my boys. Not sure if its sensory seeking, or poor decision making, or what. So not knowing what, "it is," I cannot seem to stop it. Sometimes it shows up in very unexpected ways. We did another video, part 3 for the nerf gun collection, and I was particularly bothered by what my younger son does in this video... I hate to say I found it funny, but it is and that in itself is disturbing. The fact that he even thought to do it was also kind-of weird. In fact, it was just spontaneous. We never discussed what to do in the video ahead of time at all actually, but at the same time, I guess I wouldn't expect anything less. See if you can figure out what I am speaking about by watching the video, then tell me if you think its something I should think about more than twice. Thanks...

Sorry about the poor quality...still recording these the old fashioned way...

SPD MOM: Acting careers for Asperger kids?

2011-07-19T10:49:00.000-04:00

Here is a question. Why could a child with autism possibly be good at acting? It would be their memory.. in other words, their ability to recite what they just heard, verbatim. It happens all the time in our house. The amount of commercials our younger son is able to regurgitake, word for word, intonation to intonation, is incredible. BUT, he cannot follow a simple one step instruction, like, "pick up the nerf dart, which is right infront of you." Crazy right? But true. The weather here has been so darn hot, that many days we are trapped in the house... or at least it feels like trapped. I like the heat, but when it starts to get above 90, and then you add in say 80% humidity, I'm toast. So, one of things my guys like to do, as do many, are make these nerf videos. It is great to see them perform in front of the camera, not only because they enjoy it, but it helps them to socialize in a more indirect way. Hey, ANY socializing I feel is good socializing. Rather than having to face another child, and get the words out, they can use media to get their message across. To speak.. to socialize in a "safe" way for them. The camera becomes a very good friend, and a hobby that they not only both love, but enjoy doing together as brothers. Below I have posted another video that they did yesterday. My younger son is better at looking the camera in the eye than his older bother is. Its an interesting perspective to see aspergers captured with media.

SPD MOM: Constipation Causing sleep Problems in ASD kids....

2011-07-07T11:20:00.000-04:00

Okay, maybe not what you wanted to look at at lunchtime, but very important to understand, if you have a child on the spectrum. Why in the world am I writing about this topic? Because many kids suffer through constipation, not only off the spectrum, but on. It is important to know the difference between straining and non-straining, as I feel it can affect a childs' behavior. I can honestly state it does for my guys. They have both been seeing a GI specialist lately.. and have always had problems with their bowels, whether they were way too loose for too long, or too difficult to pass, stomach pain, etc.. And now, they are on a miralaxtype laxative taken every day. It is my understanding that type 4 on the chart is the most ideal, but it should float, not sink, which means there is plenty of fiber in the diet. Both my guys have suffered from 1 and 2, although when very very young, it was more like 7 and 6.. really bad

diapers! Anyway, what prompted this poop mission was not because of a poor diet.. My guys really do eat healthy, and get plenty of fiber. We switched from white bread to whole wheat, which was a challenge.. apples, bananas, carrots, celery for snacks, whole wheat pretzels, etc.. Trying to stay away from the unbleached white flour foods as much as possible, keeping the carbs low, as well as sugar. But even with all the diet change, we still had constipation. Yes, we drink water and skim milk too.. So, needless to say, our GI specialist told us that kids on the spectrum suffer from constipation more frequently than the like. The Official journal of Pediatrics confirms this as well.

"Constipation is a frequent and significant problem in children with autism and continues to remain underrecognized. It is particularly marked within the rectosigmoid colon, often in association with acquired megarectum. The absence of any correlation between the clinical history and the degree of fecal impaction in autistic children confirms the importance of an abdominal radiograph in the assessment of the degree of constipation. Effective treatment may potentially alleviate behavioral problems and disturbed sleep pattern in autistic children."

Did you get that last sentence? Amazing.. But is it true.. Well, I personally can attest to both my ASD kids having tremendous stomach issues, bathroom issues, and constant sleep problems. Our oldest woke up in the middle of the night, every night, from age 2 till age 4. He had to have a colon polyp removed at age 7. Not the usual norm. Our youngest had been waking nightly, and this was BEFORE we saw the specialist. Since they both have been on the laxative, daily movements, #4's, AND no nightly wake ups. None. I have noticed significant difference in our younger sons' ability to manage his, "crazies," and his attention. I don't know about you , but if I skip a day, (not to be gross), I feel very "off." Can only imagine what a child on the spectrum feels like, especially if they cannot get the words out to explain how they feel. Yes, I know gross post, but it needs to be talked about.

SPD MOM: Autism Loophole for MA healthcare coverage.....

2011-06-22T10:31:00.000-04:00

In this day and age, and crappy economy.. layoffs and unemployment, it is a comfort for us to know our children will ALWAYS (hopefully), have healthcare coverage for their Autism diagnosis. No, we cannot afford healthcare as a family.... when the "self-employed," are on and off unemployed, heathcare coverage tends to go. (Well, its either that or the truck payment.. take your pick). Because of their diagnosis the boys QUALIFY for Medical Assistance. They cannot be denied coverage for this diagnosis, based on a wonderful loophole called simply, "PH 95," which states the following;

If your child has a disability but your household income is too high to receive family coverage, your child may still be eligible for Medical Assistance. The program is called PH-95 or “loophole” and uses only your child’s income to determine eligibility. If your child is under 18, and has an income of less than $851.00 per month, and has a diagnosis of ASD, he or she may be eligible for Medical Assistance. If your child is eligible, they remain eligible until the end of the month of his/her 18th birthday. You must complete an annual reapplication, and keep the County Assistance Office notified of any address change. When your child turns 18, a new application must be filled out and begin the application process. You will have to provide a parental contribution letter at this point, stating that you do not provide financial support to your child. This does not mean that you do not provide your child with food and shelter; it only means that you do not give your child money to use at his discretion. When your child turns 21, again, a new application will need to be filled out. At this point, an applicant’s resources, as well as his income, will be counted toward eligibility. Also, the applicant will need to have his doctor fill out an Employability Assessment Form. This assessment acknowledges that your child has a disability that prevents him from working.

(Courtesy of Autism Handbook Transition, Devereux)

Now, having written this, every State may or may not have the loophole coverage. That is something you would have to visit at your State DPW website. I was unable to find if there was a loophole for ALL 50 states. Anyway, Medical Assistance is imperative if you are looking for behavior therapy, or wraparound services for your diagnosed child. They are covered 100%. The sad truth is that many state Governors, especially the ones who could give a rats ass if you have a child on the spectrum, are looking to CUT the loophole, in order, you guessed it, to SAVE money. Hey, I don't blame them. This country is in a really bad state, with enough blame to go around. I personally am willing for my taxes to go up, in order to keep this loophole in place, for ALL kids with disabilities, not just autism. Currently, although you must show your income, it DOES NOT COUNT TOWARD YOUR ELIGIBILITY, if the child is UNDER 21. The Pennsylvania Law Project, whom I have contacted many times for FREE assistance with my children getting coverage, explains the loophole and how to apply. Click HERE to access their website. Although I am showing you the loophole for PA, your state may have the exact same situation and criteria. If you need these services now, better not wait to apply. I fear all covered health care support for children with disabilities will be cut, or it will be more difficult to qualify. Although I would not wish another to have to walk in my shoes, I think if more politicians had children with disabilities, or had a close family member with a disability, say autism, we would not be so apt to see the sharp ax dangling so closely to our childrens heads.

SPD MOM: Tips for traveling w/SPD & Autism kids...

2011-06-20T13:06:00.000-04:00

So I have been meaning to write this for sometime, but just never seem to get a chance on our 1 computer.. I guess its time for my own laptop?? Ugh.. seems like such a waste of money.. but maybe I would write more if I had one??? Who knows.. ANYWAY, this past Easter break, we as a family, took a trip to Washington D.C. Knowing for about 2 months in advance that we were going, was very helpful in planning for the trip, not only for logistics, but getting our younger son, "ready," to handle different situations and senarios he normally would not encounter. (ie: museums, loud traffic, crowds, ALL THE PEOPLE, big spaces, bright lights, etc..) The trip from Philadelphia was not very far.. Not even two hours as the crow flies, but you never know what your going to get on I-95. So here are some things I did that worked for us. Every child is different, so these ideas may or may not work for you, but maybe some of them will. So here goes the list;

1. THE DRIVE: Although I believe in not being plugged in, we allowed our children to be plugged in for a bit of the ride. Both boys have portable DVD players, although we usually only bring one, plus the Dvds. It makes for a somewhat quiet and no-stress drive for all. Being my kids are super visual, this is a no-brainer for us. Although this trip was short, we still stopped for a "stretch" and quick run-around the parking lot. Seems to re-configure my guys when/if they start to fall apart.

2. THE SNACKS: Water bottles with straws, gum, chewy starbursts, apples, pretzels, and chewy granola bars. I hate fast food, (its gross), so we usually pack a lunch like PB&J sandwiches. A little jelly keeps them from being too sticky.... oh and don't forget the wet wipes! You don't wanna being flying down whatever highway at 70mph, in traffic, when your child has a sticky hands, sensory meltdown!

2. THE LODGING: What worked for us was finding a hotel that had it all, meaning an indoor pool, free breakfast, handicapped rooms, and close to attractions. (Must be family friendly!) We stayed at the Embassy Suites Convention Center in D.C. We were close to the Metro, and about a 20 minute walk from the Museums. The White House was on the way, as were other impressive buildings, which kept our son(s) interested. The pool could be crowded and NOISY, so we tried to hit it off times. The free breakfast was great, as long as we got there early.. When I book a hotel reservation, I always let management know I have autistic kids who are REALLY SENSITIVE to noise, and ask for their most quiet area of the hotel. Many times, the handicapped rooms are located near the elevators, which you might think is noisy, but because they tend to have rooms next to them which are for staff, there are no guests in adjoining rooms, hence, quieter. I ask for handicapped rooms because they are always larger, and extra space is always good. This particular hotel we stayed at was pretty good, and I would stay there again. The staff was gracious, and very helpful with my guys. It was a tad crowded, but, what can you do?

3. THE MUSEUMS: Since we went to D.C., this applies. We waited in long lines outside, but I always had a map for my child to hold onto, so he could see what we were going to do. Then he could cross off which exhibit we just went to. It gave him a chance to be organized, feel in control, and have a plan. He knew what to expect, and what behavior was expected of him, BEFORE we went into the building. We always arrived right when the buildings opened. One of our last days in D.C., we hit a museum late, around 5pm... and guess what? It was just about empty. A great time to go, when crowds have vacated to eat dinner. Oh, and bring along ear plugs.. great for sleeping or in the museums. If the child hates things in the ear, try headsets.. Just even offsetting the noise somewhat, can make the difference between serenity and chaos.

4. THE RESTAURANTS: Can be difficult with kids on the spectrum. We tend to eat early, say around 5pm or so, and we always bring something to do.. Since both our boys love the card game, "UNO," it comes with us just about everywhere, when the body needs to sit still for a long period of time. The cards are so loaded with dried food, its gross, but, they have worked hard and gave my hubby and myself time at the table to have a conversation.. The kids enjoyed keeping their minds occupied while, "thinking." We always order the kids' food first, so it comes out fast.. And we try to give off "stress free" energy. I believe a big part of successfully traveling with kids on the spectrum, is to have the "can do" attitude, and keep your stress to a minimum, if at all possible. Kids pick up on uncertainty, and it can send them for a loop. (Or at least mine do/did).

Some of these are no brainers for parents who have been doing this as long as we have.. Other things to keep in mind is getting the "body ready" to enter a building, whatever building that may be. Whether it be jumping jacks, a long walk to the exhibit, pressing hands together hard, pushing against the wall, whatever... find what works, and use it like a tool. Taking frequent breaks may be what is needed. You might NOT get to do everything on the list, but better to do some well, then accomplish all with meltdowns.

Our guy kept it together about 96% of the whole trip. He did a lot of walking, and some stroller riding. He swam a lot, and we made sure he had a good night's sleep. We tried to keep him pretty much on the same schedule he would be on, if we were home, give or take an hour. Being able to travel as a family is something I never thought we would be able to do.. or at least not this early in the game. I know I have said it a MILLION times before, but without behavior therapy, this NEVER would have happened for us. I cannot wait for the next trip!