A Fond Farewell

Just last week or so I looked to see how long I have been blogging on Autism Epicenter. It has been several years now and during that time I have shared the ups and downs of my family as we have learned; and are still learning, to navigate our son’s world.

Our son, Sir Dantes, has autism.

I started blogging because I found it therapeutic to put my thoughts “down on paper”. It helped me to sort out what I was thinking. Then I started seeing how many people were actually reading my blogs and that got me, well…excited. It seemed as though I may be actually helping people. So, it is sad to write this blog. This will be my final blog on Autism Epicenter.

Follow up:

This site is to be shut down over the weekend. While it pains me I understand and completely empathize with the reasons of the site’s founder. I am grateful for the opportunity he gave me. Since beginning my blogging here not only have I developed a following of readers, I have been published in on-line magazines and sites. I have had developers of products designed for autistic children pitched to me to endorse and share. Therefore, I have made a decision to start my own site.

Of course, being a technically challenged person, it will take me a couple of weeks to get a site up and going. I ask for your patience while I learn how to do this. After all, I still have to create a domain name and there are a lot of sites out there for autism. For the time being I will post “mini” blogs on the Facebook page which for now will remain to be called Autism Epicenter. Please visit it. I share a lot of information there and share the adventures of Sir Dantes and our family. Of course, when I get my site up and running it will be announced on the Facebook page.

Sir Dantes is now nearly seven years old. I think that the years to come, with the onset of puberty, will hold many challenges for him, me, his sister, and his father. I look forward to sharing these experiences with you so that you can know that we face these challenges together.

However, for now, I bid you a fond farewell. I wish the best to the site’s founder and his family. Thank you from the bottom of my heart.

Tough Love

For some reason tonight I decided to see how long I have been blogging on this site. My first blog here was on September 25, 2009. For four years and two days I have been sharing my families experiences in dealing with autism. WOW! By the time I actually post this it may be four years and three or four days or five… I suppose by now, if you have been a regular reader, that you know my family pretty well.

By posting every two weeks or so I have shared a lot! And, I have made some good relations through this site and the Facebook page. We all have something in common. We all love someone with autism and it is one of the toughest types of love there may be.

Follow up:

It is not tough to love my son. After all, he is my son. I always wanted a little boy. I did not imagine at my age (at the time I became pregnant with him)that I was even able to bear children anymore. Not that it was impossible; after all, I am only 46 and Sir Dantes is six. I just sorta figured that I was done. He was totally unexpected! After his birth I was whisked into surgery to have my tubes tied. During recovery, my husband told me that I looked at him and thanked him for giving me a boy. I believe him. I really, really always wanted a little boy. So, it is not tough at all to be in love with him but he is one of the toughest challenges I have ever had.

Let’s just start with our social relationships. Prior to Sir Dantes’ birth I would say we had a much more active social life. We already had Ms. Maxie and she was about two years old. She is a dream child; so sweet and so good. We never had a problem getting someone to sit with her if we wanted to go out. But once Sir Dantes came around the offers to sit with the babies have become so few. Why? Well, he is a handful and you never know what may happen. I can’t blame the fear of watching him. He’s quite active and sneaky. And, he is determined. However it makes keeping up social relationships tough. How can you really remain close with friends if you don’t get to hang out with them? We invite people out but it is always a maybe as to whether or not they will show. After all, a lot of our evening is spent dealing with Sir Dantes. It’s hard to concentrate on company until we can get him asleep. We do have a some great parties about twice a year and to our friends that show up….thank you! You have no idea what it means to us!

We do have some friends that have autistic children. You know who you are and we know we can always count on you. Autistic parents tend to stick together.

Financially, it has been tough. It hasn’t been the doctor’s appointments or therapies. Luckily, state programs and insurance have covered most of that. It has been that Sir Dantes’ daddy had to give up full-time work to attend those therapies. It has been the cost of Pull Up’s for six and a half years. Basically, it has been my income supporting the family for the past six years. While I make more than double minimum wage having only one income in these hard economic times has been very tough. Now that Sir Dantes is in school his daddy has been able to pick up some gigs here and there but full-time is still out of reach. Day care would eat up the cost and Sir Dantes is better served being home in the care of his daddy. There are still to many places out there that do not allow the flexibility needed to work and care for a special needs child. We are lucky enough to have some family that has been able to help out from time to time when we really needed it but not all families are so lucky. I do have to give a huge thanks to Sir Dantes’ daddy. He can fix about anything!! He’s kept the cars running and the house in fantastic shape due to his abilities and sharp bartering skills. He took three free hot tubs off of Craig’s List and made a fully functioning hot tub which is one of favorite ways to relax on the weekends after the babies are asleep. I love him for all the hard work he does.

But, having an autistic child makes the mommy and daddy’s relationship tough. I find that we spend so much time being parents that we do not spend much time being a “couple”. Taking care of Sir Dantes can wear us out! By the time the evening is done and the babies are asleep we are just worn out. Usually, I could care less about “romance”. I want to try to catch up on the news or get the floor swept. Sometimes I just want to scroll the net and laugh at some funny photo. To have the energy to get up and do it all again, I want to sleep. On Friday nights I try to stay up and relax. This is usually when the petty arguments start due to us both being frustrated and tired. Because it is so difficult to find anyone that wants to sit with the babies for the evening, we rarely have “date” nights. We get about two, maybe three, in a year. So, all the irritation over I.E.P’s, lack of winning the lottery, lack of sociability, and so forth spills out. On the flip side, it gets out! We may replay it over and over but we get to vent. We need that but it ends up being some sort of cycle…we work, we vent, we make up, we play, we work, we vent, we make up, we play, we work,….

It is tough on Ms. Maxie. For quite sometime now she has been asked to do things to help us that she was not ready for, such as “babysitting” while her daddy and I try to do work around the house. She has had to endure her brother’s lashing out when she tries to share and he doesn’t want to. She has had to endure the stares of other people while the “crazy” family tries to do grocery shopping. There are times that her wants and needs have had to be set aside due to some issue that has to be dealt with involving Sir Dantes. That is tough.

Making sure Sir Dantes receives his equal access to an education is tough. This year we are really digging in and holding his teachers and the school staff’s feet to the fire in order to make sure that Sir Dantes can be in the regular classroom more. The list goes on and on about how much tougher it is love someone with autism. Now, Sir Dantes is lashing out at other children at school. But, it is going to be a tough road getting behavioral therapies to help. On and on….

Will it get to be easier to deal with these issues? I don’t know. Frankly, most of the time I am to exhausted with the present to think about the future. I need a nap. Good night. Take care all.

Who Didn’t Get a Progress Report

We are now far into the school year. The teachers have been met. The schedules have been set. Ms. Maxie has received her first birthday party invitation and has the first field trip of the school year planned. Pretty soon we will turn around and it will be fall break. As usual, the first grading period is coming to a close and the Progress Reports were sent out yesterday. All the reports but one (at least in our house); Sir Dantes did not get a Progress Report.

Follow up:

Here is the deal folks…I am not happy with the way this school year is shapin’ up. For those of you that have been following my blogs for awhile I am sure that around this time last year you read about my nervousness of Sir Dantes starting school and then my relief that he had such a great staff and school. The players haven’t changed, but I have. How so? Well, I think that I have had a year of being able to observe and read. The more that I observe and read the more I feel as though Sir Dantes is not getting the best that can be given. If you really think about it, none of our children are getting the best they deserve so perhaps I should rephrase that…Sir Dantes is not getting the same quality of education he deserves.

He deserves to be in the regular classroom more, he deserves that his homework is graded on time, he deserves modifications to be made, he deserves a Progress Report. And, we his parents, deserve regular updates on his progress. He, and we, are not getting this and I am not happy about it.

I felt somewhat hopeful after the first I.E.P meeting that what we viewed as legal needs for our son would be met. After receiving the “final” copy of the I.E.P I found a few things I was not happy about. I sent an email (“if it is not in writing it never happened”) to his Special Education teacher addressing the changes I wanted and received and email back tonight that these changes could be made without another meeting. Cool. That is fine, but why can you not get me the things I need to see how Sir Dantes is progressing?

First, where is his freakin’ work? School started on August 12th and today is September 17th. I can count on one and a half hands how many worksheets have come home for us to view. Most of the sheets have been related to his time in Speech Therapy. At least she is trying to step up. After four weeks of spelling test I have only had one sent home to see. There have been a few cute coloring sheets. That is about it. Where is his math work? Where is his reading work? Where is his science and social studies work? Where is his Progress Report?

There was one little homework sheet sent home to do and he competed it. It came home two times before it finally did not come home again. I put in the “Return to School” section of the folder. Why was it not checked? What is he doing all day? I have yet to receive the schedule I asked for so we could track the time in the regular classroom since they told us (not in the I.E.P and one of the changes I asked for)that they would start increasing the time.

Who am I upset with? Should I be upset with the staff or the state or the Federal Government? To be quite honest, I am not sure. I loved the progress and staff last year, and as I stated earlier, they are all the same. I do adore them. I think that they are so overloaded. I mean, one Special Education teacher and one or two aides for an entire school. Really? That is what our special needs children are worth? Yet, let us make sure that the SRO is fully equipped with gas for his car the entire year. Can the dude not buy his own gas?

And, he is suppose to be there to make sure the children are safe. Well, where was he today when Sir Dantes darted in front of a car at the after school pickup? For some reason, whichever teacher was in charge of the after school pickup just decided to let Ms. Maxie direct her brother to the appropriate spot and left them alone. When Sir Dantes saw his daddy’s car, he darted off towards the car and no one, including the SRO, was there to try to help Ms. Maxie stop him. Luckily the driver in the big SUV saw him. Maybe we do need that aide full-time beside him and demand not only that but a whole new I.E.P?

Survival of The I.E.P

About a week and a half ago we received our official invitation for Sir Dantes’ I.E.P meeting. We knew it was time. It’s time to really get down to business. Summer is over and the school year is in full swing. Well, it’s in its third week. Let’s get ready for real! Let’s go get ‘em!

Follow up:

Go get ‘em. Okay. Sigh. Last year’s I.E.P was our first and we really did not know what to expect. We’d read so many horror stories about parents battling with school teachers and officials. We thought we’d better at least look good.

I wore this dress that Sir Dantes’ daddy bought me that was black and reminded me of something a modern Egyptian person would wear. I was so sick! I coughed the entire meeting which made it hard for me to concentrate on anything. I basically decided to agree with just about anything trusting the fact that they are the professional educators. All we really wanted to do was make sure that Sir Dantes did not run off and that someone would attend to his potty behaviors. We already knew he was smart. We knew that school would be good for him socially. Sad to say, that was about that.

After the meeting we went to eat hibachi. The hot soup and the sake would make my sinuses feel so much better. This year would be different! Except that I am sick again! If you have ever lived in Middle Tennessee you know that the allergy seasons are brutal. The ragweed right now is at all time highs and my allergies are giving me grieve. So, anyway back to the I.E.P.

Over the course of the year we paid a lot of attention to Sir Dantes’ activities in school and kept close communications with his main Special Education teacher. We started having questions. What kind of questions? Well, there was not any communication from his “regular” teacher or his Speech Therapist. All communications would come directly from his Special Education teacher. Most of the communications were about needing more Pull-Ups and what his behavior was like that day. So, we begin to wonder if he was spending anytime with anyone else. We also did not receive a lot of his worksheets, and when we did get some of his school work to see it came in a big bundle with no dates. We stopped receiving the monthly newsletter from the teacher that told us important dates and gave an outline of what the class would be working on. Maybe we need to look into this a little further? Between work, two children at two different schools, mileage, and so on; we had come to be complacent.

Instead of calling an I.E.P, we asked for just a Parent/ Teacher meeting to touch base. Both of his teachers gave glowing reviews of his intellectual abilities and his sense of humor. Well that’s good; Sir Dantes is smart and funny. That’s about it. So, why….Behavior.
From what I gathered at that meeting was that because they can not get Sir Dantes to sit in the classroom he is very disruptive to the other students and the teacher, who in turn can’t teach for having to keep getting after Sir Dantes.

Over the summer we started to try our best to learn more about what can we do to help Sir Dantes at school. More research on-line…attend a one day seminar about I.E.Ps…talk to others. Basically, learn to advocate within the limits of IDEA. I would like to throw in here that the language of the laws is vague and I believe it is meant to be that way. But, we felt as prepared as we thought we could be. Ready to advocate to the ends of the earth if we would have to for our son.

I as said earlier, I was sick again! So, I took some cold and allergy medicine before the meeting. This is not always a good idea because they make me sleepy, but I thought better to be a bit sleepy than coughing on everything or spewing up snot. And, I dressed professionally and came equipped with my copy of the IDEA laws and notes from the seminar. Let me at ‘em! Lol! Sir Dantes’ daddy set his phone to recorder and freaked them all out. So, they had to get out a tape recorder. Introductions made…right’s read…let’s get down to business…yawn!

I held their feet to the fire when it came down to the little amount of time that Sir Dantes is actually spending in the “regular” classroom. Thirty minutes a day is unacceptable to me and his daddy. Fix it. So, the Functional Behavioral Assessment will be scheduled. And, let’s get this boy an IPad in class. He loves it and it will keep him sitting still. All you have to do is download the lessons…He’s bored. It’s plain and simple; and it is their job to find ways to get him engaged. Overall, they agreed with about everything we said and wanted. We backed down on the all day aide for now due to some differences in opinion as what may be best right now at this moment. Sir Dantes is making a lot of strides towards being more independent and we do not want to risk that. They know we are watching and paying attention.

So, no horror story here. It was just another I.E.P with some good folks doing the best they can with a system that doesn’t want to shell out some more money for special needs. I have come to believe that, overall, the battle is not with the school but with the system. Our system is broken, so a new battle should begin.

Autism & Fixations

My son has to know where we are at all times. That includes the pets. We don’t own a 5,000 square foot mansion so when we leave the room we’re not that far away. But when one of us steps into another room Braden immediately gets up and starts asking where we went.

The other night Braden (Brad-inn) was eating dinner when Mom decided to go to the bathroom. As soon as he noticed, Braden started asking me, “Where’s Mama go?” even though he knew where she went.

This wouldn’t be such a big deal but for the fact he gets fixated on it. That drives us nuts! He’ll keep asking until we answer the question that he already knows the answer to. And sometimes he’ll keep asking anyways.

Follow up:

Zip is the cat and Lucy is his dog. If they aren’t in sight stop the pressesuntil we figure out their exact positions on the premises. I think we need to install GPS transmitters up their butts and give the receiver to Braden. Sheesh!

This is one of my son’s little autism traits that we’ve gotten accustomed to. It isn’t new. But we’ve dealt with it for so long that I haven’t thought to write about it until now.

Another thing; He really fixates on bugs. He wants them dead. He does not like bugs. If he’s eating dinner and he sees a fly zooming around the room everything must stop until the fly is dead. He won’t take another bite of his food until the fly is dead.

It doesn’t matter whether or not we are sitting down eating our own dinner. No, we still have to get up, find the fly, chase it around the room, and give it a proper burial. Then we can return to our cold food.

If the tiniest little spider is on the ceiling 12 feet above Braden fixates on it and talks about it. He wants it dead. If he could he would kill it himself. It’s crazy!

It’s gotten so bad that when we barbeque we don’t use the sliding glass door nearest the grill and kitchen. When we use that door a fly or two tends to slip inside the house and then we have a major issue on our hands. So we use the garage door to go out the house and around to the patio when grilling.

What else does our son fixate on? Anything that we tell him to NOT touch. If he can’t touch it, then he absolutely MUST touch it.

Wasn’t too long ago that I had a sore on my nose. It was tender. Naturally, Braden saw it and immediately wanted to touch it. When I told him not to touch it, his wanting to touch it increased by the power of 10! He had a fit because I was avoiding him because he was reaching for my nose constantly. Ultimately, the pain of just letting him touch the sore was easier to bear than the pain of his fits. Grin and bear it as they say. And so I did. And then Braden moved on.

Kids with autism tend to fixate on one thing or another. Locks, bugs, sprinklers and our current locations are just some of the things that cause our son to fixate and forget about everything else.

What to Do?

The first week and a half of school for Sir Dantes was a delight for him and frustrating for me. There was basic confusion, lost nap mats, lost snack containers, lack of communication, and so forth. After a long letter to his aide and teacher I am glad to report that we seem to be on track with me having a better idea of what is going on day to day. But, what really helped me to have a better understanding? A lengthy conversation with his Occupational Therapist.

Follow up:

I mentioned before in a previous blog about how we had to have several evaluations repeated to determine his status as “Special Needs” at school. It was a little frustrating since we’d already been down this road. Of course, they determined that he is indeed autistic and that we needed an I.E.P to determine how to best see to his educational career. However, one evaluation was missing at the time of the I.E.P and that was the one to be done by the Occupational Therapist.

He had a family emergency and we all thought it best to proceed so Sir Dantes did not fall further behind. So, this means we will be having another I.E.P soon to put into place the finding of that evaluation. Fine. Emergencies happen and I can not fault him or the school system (except that maybe budget cuts will only allow for one occupational therapist for an entire county school system). Anyway, emergency over and evaluation scheduled. Now, the results.

Prior to getting the results, I was a little put off that Sir Dantes has only been in his regular classroom for special activities…music, art, library, recess, and lunch. What!! You are suppose to have him in the regular classroom as much as possible. Why is he not there? Why no communication about this? Somebody please clarify this for me!! I know you have heard of the “Least Restrictive Environment”. Is he causing that many problems?

Well, no. That is not the case at all. This is where the conversation with the Occupational Therapist comes into play.

Apparently Sir Dantes is a one in every six year kind of child with autism. He has scored extremely high on his cognitive testing and they determined that the child is taking in and processing information so fast that the therapist is not sure how we/ they are going to keep him engaged and motivated. Because of his sensory issues, he can not concentrate in the regular classroom. He told me that kindergarten is to chaotic, although organized, for him. The sensory overload is to much so in order for him to concentrate he has to leave.

So, Wow!! Our kid is really smart. We could have told them that, but I guess they had to see it on their own. Now, you may think that this is fantastic news, but slow down.

It is wonderful that Sir Dantes, who is just starting kindergarten, could easily master second grade work this year; hell, maybe third grade. But what do you do with that? His social inabilities and sensory issues would make it impossible to put him physically in those grades. Can you imagine the fun that would be made of him if he were to enter a second grade classroom still wearing diapers? We need a plan. A real plan to deal with this. Plus, he’s just really now getting his first taste of being around groups of other children. He needs to learn to make friends and that would be very difficult with children a few years older than him. There’s other issues. My brain is just tired.

He loves school. He loves to learn. We want him to succeed. It is wonderful that he is so cognitively blessed. It gives me a lot of hope for his future. One in every six years kind of child with autism that has passed through the county school system. Cute as a button! However, the social and sensory issues continue to cause problems. At least I know where I need to put my efforts in towards helping to make him a well-adjusted child that can succeed. Sigh.

Just an after thought…that other child six years ahead is still in the same county school system and is doing very well.

EZYDOG.com Offers Harness for Service Dogs

We recently discovered a service vest that’s unlike any others I’ve seen. And it’s particularly well suited for families who train their own service dog. This is EzyDog’s Convert Harness. You can find them at EzyDog.com.

The really cool thing about EzyDog’s Convert Harness is that you can get it with custom removable side badges. See that side badge on the harness that says “EZYDOG”? It’s attached with Velcro.

Don’t get confused between what’s a harness and what’s a vest. More often than not the two terms are interchangeable in the service dog world although harnesses are usually made of higher quality materials, they give you better control over your dog, and offer additional functionality as well. Naturally, a good harness is usually more expensive than a vest.


Follow up:

For the sake of entertainment let’s frame the rest of this blog post as if it’s an interview between you and me. You’re the interviewer and I’m the interviewee. You ready? Begin the interview. Oh, and please, no questions asked directly to Lucy, my son’s autism service dog.

You: So what’s the big deal about removable side badges?
Me: Sometimes you want to remove the higher expectations and extra attention that come along with taking a service dog everywhere you go. Removing the side badge that says “Service Dog” removes those things.

You: But having your autism service dog labeled as such is exactly the thing preventing store employees from questioning you about bringing your dog into their store…
Me: Correct. And because of that I wouldn’t remove the side badges in stores, restaurants, etc. I would only remove them when we’re out walking the streets or strolling through the park.

You: What’s the point?
Me: When you have a service dog people love to stop you and talk about it. Not that we’re anti-social, but we don’t want to stop and talk to 20 people in the park. And my son, who has autism, just wants to keep walking. Removing the side badges will stop people from approaching us.

You: Why can’t you just remove the whole harness?
Me: That’s exactly what we used to do. But it’s a lot easier to simply remove the “Service Dog” side badges than to remove the entire harness. And sometimes we don’t have a collar on Lucy, so the lead (leash) attaches to the harness. If we remove the whole harness/vest then how do we keep the dog on a leash?

You: I’ll ask the questions here. Ummmmm, what advantages other than the removable side badges does EzyDog’s Convert Harness offer over vests and other harnesses?
Me: Many things. This piece of equipment is a high quality harness, unlike many service dog vests that are akin to wrapping your canine in a doggie t-shirt. I’m seriously impressed with this harness. Here, I’ll list a few of the more impressive features.

  • The Convert Harness comes with a small handle on top for quick, direct control of your dog. That handle is magnetic and so it lays down when not in use. The previous harness we had on Lucy had a handle that always stayed up and flopped around. I thought about cutting off the darn thing! I love the magnetic handle!
  • Reflective material and reflective piping all over. We take night walks. My son loves walking and when we’re out in the neighborhood the reflective qualities of the Convert Harness will make us more visible and keep us all safe from cars.
  • LED light mount on one side of the harness so your dog can tote his or her own flashlight! Walking his dog and holding a flashlight are a little much for my son. Remember, he has autism. So putting the light on Lucy is perfect! That said, it’s a bit more of a novelty than a really useful feature. Lucy’s fur and her head get in the way of the light.

You: Who says my autism service dog has to wear a harness or vest?
Me: Nobody. Nothing in ADA (Americans with Disabilities Act) specifies that your service dog must wear a vest. Nothing. It’s strictly a courtesy. But it’s a courtesy that will save you time in having to explain your kid’s dog is a service animal to every business you walk into. For that reason we choose to outfit Lucy in a service vest/harness.

You: You said this harness is particularly well suited for families who train their own service dog. How so?
Me: Service dogs trained by places like North Star Foundation and Autism Services Dogs of America are much better trained than dogs that families train themselves. I’m convinced of that. As such, sometimes Lucy, my son’s autism service dog, can let her hair down and act more like a pet. We trained her ourselves and especially at home she acts like any other dog. As I said above, removing the “Service Dog” side badges removes expectations. Removing the added expectations also removes pressure and makes us, the parents, more comfortable. If your service dog is trained by a foundation you probably won’t notice much of a difference. But experience has taught me that when the dog is self-trained you’ll dig having the ability to remove the side badges.

Also, dogs trained by foundations tend to be totally docile and are extremely attentive to their handler. Self-trained dogs can be a little less attentive. For example, Lucy loves squirrels. When she sees one of those delicious little furry appetizers running up a tree it gets her attention. No, she doesn’t bolt after it, but it gets her attention and turns her head a little. The Convert Harness gives you extra control over your dog in those situations. That is a comfort also.

You: OK, ummmmm, well… did you find any flaws or things that EzyDog could improve with this harness?
Me: As I’ve indicated, I think this is an excellent harness and it’s difficult to find any faults with it, but if EzyDog is looking for ways to improve it they could use chrome D-rings instead of the black ones currently in use. Paint chips off the black rings but chrome rings have no paint so they don’t chip. The moment we took our brand new harness out of the package the black D-ring had chipped paint. This was before we had ever used it. It’s only going to get more chipped with continued use.

Also, the manufacturer notes that this harness is made to not rotate. In other words it shouldn’t spin or twist to one side, but it should stay fitted nice and proper. In an ideal world with an ideally trained dog and a perfect handler I’m sure it lives up to that billing. But leashes get pulled on and Lucy’s harness twists a bit. I think EzyDog could possibly solve this issue by installing an additional D-ring off-center and turning both D-rings 90 degrees (with one of them positioned somewhat on the right side of the harness).

The softer, less abrasive side of the Velcro is what’s permanently sewn onto the Convert Harness. That’s the side of Velcro that wears out. If you pull the side badges on and off with much frequency, before long it will stop sticking. EzyDog should sew on the the opposite portion of Velcro. Then, when the badges stop sticking you’ll only have to replace the badges, rather than the harness itself.

To EzyDog’s credit not one harness/vest we’ve used has stayed right and proper. They all get pulled and so they all twist slightly to the right. No harnesses have an alternate D-ring installed off-center. They all have a single D-ring installed directly on top. Maybe it’s time for EzyDog to break the mold?

For my family the decision is an easy one. We’ll go with the Convert Harness from EzyDog.com.

For the sake of being upfront and transparent you should know that Autism Epicenter was given a Convert Harness from EzyDog for evaluation purposes. It is now the only harness/vest we use on Lucy. Hey, I can’t tell you about a product I’ve never seen, touched, or used! But, as you read, I point out the positive things and I also discuss the things that could be improved.

Loving my “F” Student

In the mail we received a single, blue piece of paper from the school my son attends. We didn’t know what it was. We opened it and it’s a 2012-2013 1st Trimester Deficiency Report letting us know that our son, who is 10 and has autism, is getting an “F” in Beginning Band. Also, this deficiency report lets us know that his “Academic GPA” is 0.00.

And my heart sank. A flood of emotions came to me. But mostly it was sorrow and anger. Sorrow because this report served as a reminder that my only child, who is doing so well in school this year, is a failing student when measured up to the regular curriculum. And this is only Beginning Band! Anger because the school should have stopped this notice from being mailed to us.

Does a slap in the face hurt any less if it’s an accidental slap? No.

This deficiency report was a slap in the face. The school could have just as well sent us a piece of paper that said, “Hey! Your kid is stupid! Remember?”

Follow up:

Braden, my loving son and “F” student, has autism and he’s on an IEP. He doesn’t receive letter grades like the typical students. That’s because he is not a typical kid, he has a disability that makes everything much more of a challenge for him. He has a neurological disorder that cannot be cured. His brain doesn’t work like yours and mine. (Though I’ve known that for a long time, it’s hard to write those words and even harder to re-read the words I’ve written.)

Somewhere at the school there was a communication break down. And this deficiency report got sent to us.

I know it was accidental. I know it somehow slipped through and got mailed to us. They didn’t mean it. Nobody talked to the band teacher, who is probably a really nice guy. Somehow it got into our mailbox. Considering all that, it’s still a sobering reminder of Braden’s many deficiencies, academic and otherwise. He’s not a regular kid and he cannot pass even a Beginning Band class. Not even close! An “F”!!!!!! 0.00 GPA!!!!

“Hey, your kid is still stupid! You thought he was enjoying school and having fun and learning with all the regular kids! But he’s still the stupidest kid in his class! And it’s not even close!”

As the parent of a child with autism, what would your response be if the school just came out and said that to you? Pretend they said that and you’ll begin to feel the emotions that I felt.

Yes, I know they didn’t say that. Perhaps I’m over-reacting. I’m emotionally volatile. I’m an over protective Dad maybe. But IF they said that wouldn’t you turn around and start beating the crap out of someone? I wouldn’t ask questions, I’d just go straight into action with arms swinging.

That’s my emotional response. That’s what I’m thinking. I’m letting you into my head. I’m human. I’m a man of the Lord, but I’m a severely flawed man. In that scenario I don’t know that I could control my anger. I pray that I could.

We got this deficiency report in the mail about 2 weeks ago. I’ve had it on the refrigerator. I took a while trying to figure out how to discuss it with the school without crying like a little girl while simultaneously holding back my anger. But I want to make sure they know how this little blue piece of paper affected me. And I want to make sure I never see another one of these things again!

I hope no other parents of kids with disabilities got similar deficiency reports.

I wrote a very carefully thought out email to the Special Education Administrator. I figured that email was most appropriate in this situation. Sometimes I like to rely on email and use it as a crutch of sorts. It allows me to express how I feel without showing how I feel. And I did express the sorrow and anger we felt as parents.

My email was well received. In response, the special ed administrator sent us a heartfelt apology and she subsequently looked into the matter and got some answers as to how/why the deficiency report was sent. It was in error, of course. She gave us more details than that, but the details won’t interest you here. Bottom line; it was a mistake.

Dun, dunnnn, dunnnnnnn (music). Just another day of drama for us as parents of a child with special needs. “F” student or not, we still love our little boy!

I Want

Weekends! Yea! Well, kinda yea. You never know how the weekends will go having a child with autism. I should rephrase that. You never know how the minutes to minutes will go when you have a child with autism. However, lately taking Sir Dantes out and about on the weekends has been a pretty good thing. So, today I took him and Ms. Maxie shopping.

Before Sir Dantes started talking I really never knew exactly how he felt about what I bought for him. Every now and then he would show a definite dislike for something by using his hands to push it away. The way he showed that he wanted something was just to grab at it, but he has a tendency to grab at a lot of things he doesn’t really want like raisins. One day at Krogers, Sir Dantes had to have the raisins.

Follow up:

I was hesitant to buy them because he already has really frequent and nasty number twos. But, he insisted so I caved. Turns out, he couldn’t stand them. He must have liked the color of the box or something. So, before he started talking buying any type of article for Sir Dantes was a “hit or miss” type of situation.

As I said earlier, taking Sir Dantes shopping with me and Ms. Maxie seemed like a good idea. I planned that we would go to a couple of consignment shops and the grocery store. I packed a snack, a drink, his IPod, a change…my purse was heavy. We got in the car and jammed some Linkin Park. The day was pretty so I even opened the sunroof. Sunshine faces were dancing in my mind. Well, the clouds soon began to creep in.

First stop…UR consignments. Sadly, she is going out of business but everything was 50% off and I found some great boots! Before I found the boots I stopped at the children’s section. Here we go with the “I wants”. Do you think I am talking about Ms. Maxie? Well, no I am not. It was Sir Dantes repeating and grabbing. He even threw his IPod to the floor! I thought we were for sure going to be arrested for shop-lifting as many times as he made a bolt for the door with clothes in his hands. Then I thought I’d be arrest for child abuse because I spanked him. I probably looked like a mad woman running around the store. I even had Ms. Maxie run interference for me at one point!

Praise be the Lord that the owner knew my kids. My husband likes this store and has been there before with the kids. She even remembered the last hat that Sir Dantes’ daddy bought for him. Okay, we are out of here with more clothes than I really wanted to buy. And, I got my boots and we were not arrested. So far so good. Let’s go on to Wal-Mart. I wanted to buy the babies some new jammies and slippers.

Except for the meltdown over the “Cars” slippers, everything was pretty smooth. I like that Wal-Mart has karts. Sir Dantes is very happy to ride in the basket part. Cool. I am not usually ever buying anything here that can not stand a little abuse. Slippers and jammies are all that I need. I was pleased to see that most of the slippers only cost $6.00. I tell Ms. Maxie she can choose from this one, or this one, or that one. She sticks to the budget and picks a cute pair that will be fairly sturdy for the winter. But Sir Dantes; oh no. We have to have the “Cars” slippers. He would not relent. “How about these ones?”. To my question I got a very clear “no!”. Then he wanted to wear them.

He absolutely had to wear them. I was not going to let him. I don’t remember why but I had a good reason at the time. Meltdown! In the underwear isle the meltdown started. It lasted until check out but I was determined that I was going to get what I needed and he would not prevent me from that. He calmed down once we got to the car and the bags were in the car. On to the grocery store! By this point I had ruled out the second consignment shop.

Once at the grocery, I let Sir Dantes choose the kart. He did but he was still antsy. First to the deli to get a cookie, but we were stopped by an employee offering us cream cheese cake. Mmmm…that started to calm Sir Dantes down for a bit. By the time we made it through the produce section he was up and going. “I want, I want” while he grabbed at everything. On no! I am not buying every little thing that he insist that he wants. After we made it through the hygiene area I had to force him into the seat and put the strap on. Of course, he fought and screamed the entire time. Just when I thought I couldn’t take anymore a nice lady offered them ice cream. We made it. Sigh!

Well, it was an interesting day. We got through it and had a good evening. That is to say it was as energetic as normal. You can never take your eyes off him. He wanted Lucky Charms for a snack. “I want, I want”. They both had some for a snack. Now they are both asleep. That is nice. I get a chance to finally relax. I am so glad that Sir Dantes is talking and that he doesn’t seem to be a parrot. It is nice to know that he likes pumpkin flavored ice cream. But, if mommy says “no” please don’t keep saying “I want”.

Thanks for listening. I am done.

Ideal Shoe Laces for Kids with Special Needs

It took a lot of internet research, but I finally found the laces that will give my 10-year-old son, who has autism, “shoe independence.” And that’s a big deal. He can’t tie shoe laces. And velcro shoes get scarce once your kid gets beyond the toddler years.

Elastic laces didn’t cut it. But, that’s where we started. We tried ‘em. They lasted a measly two days in my son’s shoes. Seriously… two days and they busted.

More than 6 months later, after nearly giving up the search, I came across Greeper Laces. Wow! They work!

They aren’t elastic – they’re real laces, made of the same material as normal laces.

Follow up:

I liked these laces so much that I contacted the company to let them know what a huge difference these made in the life of my son. They are such a game-changer for people with disabilities that the company agreed to let me sell them on Autism Epicenter. If you want some, just buy ‘em from our little online store. When you do, a portion of your purchase price goes to a family dealing with autism – my own!

The Greeper motto is “Once applied, always tied.” And it’s true. You only have to lace up a pair of shoes one time and they’re good to go.

Once the laces are installed, you pull the tab (little white pull tab in the pictures) down to loosen the laces. To tighten them, just pull the little grommets on the loops.


When normal laces frustrate kids with special needs, Greeper Laces build confidence and independence. Not to mention that once these things are installed the parents’ days of stooping to tie your kid’s shoes are over. Gotta love that!

See the shoes in the pictures? Those are mine. I fitted them with Greepers. I needed to make sure they were good reliable laces, and they are.

Though Greeper Laces comes with written and visual instructions on how to install them, the first time I fitted them into my son’s shoes they came undone. They came undone because I cut the laces far too short on the ends after tying the knot. When you install them, don’t make the same mistake. Be sure to leave an inch or more of lace on the ends so that when the knot loosens it doesn’t come undone. And tuck the extra into the sides of the shoe so it’s hidden and looks clean.


Also, when installing the little plastic component toward the end (the goodie that covers the knot) make sure the laces come over the outside of the lace holes. That will ensure the plastic goodie stays upward facing.

When I first installed the plastic goodie on my son’s shoes I did it incorrectly. And the darn thing kept flipping upside down, revealing my square knot beneath. If you want the laces to look nice and clean make sure you do it right!


These laces are marketed to athletes, not children with special needs. And I like that. I gotta keep my kid cool!

If you’re the parent of a child with special needs you can understand how ecstatic I am about these! I want my boy to have shoes that look just like every other kid’s shoes – sporty, trendy, fashionably cool! And since Greepers come in many different colors and flavors now my boy can wear whatever shoes he wants. It’s good to be shoe independent.


And I love the color selection! (Did I mention that already?) Take it from another parent, these are the laces you’ve been searching for! Down Syndrome, Autism, or any disability that impairs motor skills… Greeper Laces are the answer to tying shoes… and looking sporty!