Thursday, March 31, 2011

Okay enough with the potty mouth

I know the last thing you want to hear about is more potty issues. But hey this is my life right now. Joshua needs to stop having accidents for my own insanity. I can deal with the meltdowns, the biting, the refusing to eat dinner or any resemblance of a healthy meal.

No Joshua, gummy bears are not a power food.

BUT I can NOT deal with potty issues. I hate potty training. I've been working with his resource teacher, OT, and teacher at school we are trying to combat the potty issues. They have created a log sheat so I have detailed information when he does have an accident other than just a bag of clothes sent home. They also have a schedule of when he is going to be told to go to the restroom. Great. However, he has refused to go when they tell him to and can not force him to the restroom. The other day they were telling him he needed to go try to use the potty and he sat in his chair refusing and then he wet his pants. *BANGING HEAD AGAINST WAll*

At home he has accidents. I kind of threw my hands up in the air last night after yet another accident. I told Joshua "I don't know what to do, I don't know why you are having accidents, what can I do to help you stop having accidents"

These were more rhetorical questions, not expecting an answer but yet he gives me one.

Let me stop going to school and I won't have accidents. At that point I just had to walk away.

A few minutes later I went back to the bathroom. He was taking a bath and I sat down to talk to him. I explained how the bladder works and how you get that sensation when you have to go and does he get that and he was like yeah. Then I asked him why don't you go to the bathroom. He says I don't want to stop or I'm focused on something. (paraphrased)

I then ask well doesn't it feel uncomfortable to sit in wet pants?

His answer was no. I reworded the question 100 different ways to make sure he understood what uncomfortable meant and well he does. He says he likes sitting in wet pants and it is comfortable.

All I can say now is HELP. I don't know how to work with this. Does anyone out there understand? Any Advice? Any light at the end of the tunnel?

Friday, March 25, 2011

My heart --- insert knife

Joshua has been having potty accidents a lot lately at school. I am so frustrated, matt is so frustrated, everyone is frustrated (except Joshua I assume). During school, if he has a good day behavior wise he has a green day. He usually has a green day. But every morning I hug and kiss him goodbye and say okay, let's work really hard and not have any potty accidents today and let's make sure to have a green day. When he has good days and is successful he jumps in the car and announces, "Mommy, I had a green day and no potty accidents" My response has always been, "Joshua great job, I'm so proud of you".

On day he doesn't achieve one or the other he doesn't say anything. I usually question his day and asked him why he didn't get a green day or why he had a potty accident. I know these questions can be futile especially with kids on the spectrum. The answers are always I don't know. And he certainly may not. I as his mom don't understand so why should he.

Anyways, back to today. This morning he was so excited because ANGRY BIRDS RIO came out. This boy loves his "wacky birds" as he calls them. It's his favorite app. And he's better at it than me. So I promised him that if he had a green day and no potty accidents then we would buy RIO tonight when he got home.

Sadly, he got in the car and did not have a green day and had a potty accident. Sigh. I asked him what happened, etc. He said I don't know. I didn't really know what to say.

Then out of the blue he said, "mommy, are you still proud of me.." in the absolute most pathetic little voice I ever heard.

I swear I almost burst into tears. I assured him that I love him and am always proud of him. I gave him big hugs. Then I was looking through his communication folder and saw that he passed his weekly sight word test. 100% so he gets to move onto the next set of words. This is our goal every week. So I immediately high-five him and congratulate him. He immediately says, "since I knew all my words and get to move up, can I please have Angry Birds Rio"

What is a mom, who just had her heart ripped out, supposed to say to that.

I gotta go now, Joshua wants to show me something cool on his new angry birds app.

Sunday, March 20, 2011

The Best Kept Secret

So apparently, federal law mandates that parent counseling/training be written in the IEP if so requested. Here is the article that addresses the issue. Our IEP meeting is coming up and this is something that would really benefit our family. However, I can't find the language in the actual IDEA to confirm this article? Anybody else have any knowledge? Has anyone ever asked for this? How did you proceed. Now that you know about it will you be looking into it? I would love to hear your thoughts.

The Best Kept Secret
School Districts are Obligated Under Federal Law to Offer Parent Counseling and Training

By Tracey Spencer Walsh, Esq.
Senior Counsel
Mayerson and Associates

When you have a child with autism, there are so many things to “stress about” but parents should not have to do it all alone. School districts are obligated under federal law to offer, as a related service on the Individualized Education Plan (IEP), parent counseling and training. It is the best kept secret.

It is perhaps the most overlooked legal right parents with an ASD child have. Many school districts around the country ignore this provision, and some, like the New York City Department of Education, claim it is embedded in its District 75 (Special Education) program and therefore routinely fails to put parent counseling and training on the children’s IEPs.

Imagine that you are at your child Josh’s IEP meeting either for the first time or the “umpteenth” time. Your child’s teacher paints a picture that, no matter what she tries, she can’t get Josh’s behaviors under control – she’s “at a loss.” You think to yourself, “Me too!” The Committee on Special Education (CSE) chairperson sighs and says, “That’s very typical with autism,” and moves on to discuss the class size your child should be in next year. Wait. Stop. Typical of autism? Hmm … you were told by Josh’s pediatrician that autism is a spectrum disorder and that Josh will present with unique needs and, while there are commonalities among ASD children, there is nothing typical about autism; behaviors vary from child to child and there can be a multitude of reasons for the behaviors. But you are not sure and you are in a room filled with educators – don’t they know best? You think so, but that is not how you feel. You are not even sure what questions you should ask, but you try and blurt out, “Are Josh’s behaviors normal?” The teacher is about to answer, but the CSE chairperson cuts her off and answers you with a curt, “Yes, it’s normal for children with autism,” and continues with the conversation about class size. You are just not sure. During the meeting, the team decides on the related services Josh will get: speech and language therapy and occupational therapy. It occurs to you more strongly than ever that you really need help with managing these “normal behaviors” and you ask, “Is there any help I can get to help Josh with his behaviors?” The CSE chair gives you a sympathetic smile and tells you that she is sure there are parent groups you can join, but offers you nothing beyond that. You think to yourself, “I need help supporting Josh’s needs at home – I don’t know how they teach him skills at school.”

Know Your Federal Rights

Your instinct is right, and Congress has recognized that parents do need help in the form of parent counseling and training. The federal regulations define parent counseling and training as:
(i) … assisting parents in understanding the special needs of their child;
(ii) providing parents with information about child development; and
(iii) helping parents to acquire the necessary skills that will allow them to support the implementation of their child’s IEP or Individualized Family Service Plan (IFSP) (34 C.F.R. 300.34(c)(8)).

Parent counseling and training is mandated as a related service to be offered as part of your child’s IEP.

The Official Comments to the Federal Regulations under the Individuals with Disabilities Education Act (IDEA) help us to understand what is meant by parent counseling and training (Under the Related Services heading in the Official Comments published March 12, 1999 in the Federal Register (Vol. 64, No. 48, at page 12423, et seq.), Parent Counseling and Training is included and defined).

The federal law makes it clear that parents are entitled to counseling and training in how they can help implement their child’s IEP goals and objectives.

Parents can and should ask that parent counseling and training be listed as a related service on their child’s IEP. The frequency and duration of the parent counseling and training depends on what your child’s needs are. A student with autism with many severe behaviors should have intensive parent counseling - a half hour once a month is not enough. Parents should present an expert report at the IEP meeting or have an expert participate at the meeting who can recommend the level of parent counseling and training that is appropriate for the disability you are supporting at home.

Parent counseling and training, as obligated under federal law, should not be the best kept secret and, hopefully now, the cat is out of the bag.

Tracey Spencer Walsh, JD (Fordham University School of Law, ’94) is the Senior Counsel at Mayerson & Associates, a New York law firm dedicated to representing children and adolescents on the autism spectrum, and assisting families in accessing the education and related services necessary and appropriate for students. For six years, Ms. Walsh worked as an educator and served as an Upper School Dean of Students at an independent school in Rye, New York.

Friday, March 18, 2011

Magic 8 Ball please

Something's been on my mind for a long time and I haven't been able to put words to it. The last few days I've been mulling things over more and more and I realized that my frustration with Autism has to do with the unknown.

With a typical child, for all the phases and issues that arise there is guidance out there to help navigate through it all. Most information out there will apply to your typically developing child. So most parents have a pretty decent road map to their kids' development, phases, and common issues.

The problem with Autism is that even within the Autism community there is no such road map. You all know the saying if you've met one child with Autism then you've met one child with Autism. This is the part that is so frustrating. Even the moms I know with autistic kids are all on different parts of the spectrum or their child's weakness is J's strengths and vice versa.

I have a pretty decent road map for Emily and though there may be detours along the way I know that there are things she will learn and accomplish at certain times in her life based on others' experiences. Since no two kids with Autism are alike, I don't feel like I really have others' experiences to rely on for him.

Although I am surrounded by a pretty big support network it still feels like we are alone on this journey and nobody can really understand what it's like raising Joshua or offer any kind of roadmap.

For now, all I can hold onto is my faith to get me through and the new magic 8 ball application I uploaded to my iphone.

Will Joshua ever stop having potty accidents.

*shake shake shake*

Magic 8 ball says: "Does not look promising."

Well that's not helpful either.

I guess that just leaves it up to my faith.

Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Thursday, March 17, 2011

Where does Autism begin and end

Joshua is a great kid with a great personality. He is high functioning. He makes decent eye contact and plays well with one or two others. He gets lost in a group and doesn't seek out group games. He tells me all the time he is just shy. If he doesn't know the person or see the person very often he'll probably hide behind me and not say hi or speak to them even with me gently prodding him to do so. He is very smart and loves video games and puzzles and building with legos. He is very analytical. He loves his sister first thing in the morning but by mid morning realizes that it's more fun to terrorize her and annoy her. He's almost 6 and still pees and poops in his pants. He was almost completely potty trained but then regressed mid year of last year. He uses the potty most of the day but we still struggle with it. I'm hoping it fully clicks at somepoint.

Our biggest issue is discipline. When do we discipline and when do we offer grace because it's out of his control. How do you tell the difference between what is the autism controlling his actions or a boy misbehaving. I tend to fall on the give him grace and not be too harsh on him and my DH falls on the side of discipline.

In the morning when it's time to get dressed, he takes off through the house fighting us every step of the way. He thinks it is a game and is giggling the whole time and then we catch him and have to force his clothes on so he won't be late. Matt gets frustrated and Joshua gets in trouble. I get frustrated at Matt and at the situation because I don't know what the answer is. Matt believes that Joshua should be dressing himself every day. It's hard when you have a 4 year old girl who is fully dressed some mornings before I even wake up because she loves clothes.

We battle over meals every single day. Dinner time is a pita. We get him to the table and he takes one look and says "yuck" and runs off. We fight with him and force him to sit down and eat. This goes on a long time before we just tire and let him go off. Right before bed he cries he is hungry.

So where do you draw the line between disciplining for bad behavior and autism behavior? How do you handle different scenarios. I don't have the answers and am very lost. Emily is picking up on his "behaviors" which is aggravating. It's hard punishing one but not the other? How do you make the punishment fit the situation? On one hand, I know he doesn't get a pass in life because he has autism and I try to treat him typically but on the other hand I don't want to make things worse by punishing him for things out of his control. I don't always know what is and isn't his control and it gets very confusing.

Wednesday, March 16, 2011

What I learned through Autism

Since getting Joshua's diagnosis I have learned to stop judging other moms. It's amazing how harsh moms are about other moms. Reading posts on message boards will show you how critical we can be of other people. I no longer look down on moms in a store with a child melting down. I don't think wow, that kid needs discipline or what is that mom doing. I realize things aren't always as they seem. That everybody needs the benefit of doubt and encouraging words. Most moms just do the best they can and having a child with Autism who looks typical to the outside world helps me be more sympathetic to others.

Belonging to different moms groups has its benefits. I became aware early on that if I had any concerns there was free evaluations through the county even at the age of 2. I never would have known this had it not been for these message boards. I have met some really good friends through message boards and online groups. They definitely have their benefits.

HOWEVER, and this is a big however, they also bring out the worst in people. You realize that parenting is controversial. So many things to debate. So many things to make you feel superior or inferior in your own parenting style. Vaccinate, don't vaccinate. Cry it out, don't cry it out. Spank, don't spank. Co-sleep, don't co-sleep. Everyone becomes so threatened by these debates. Why does it matter if someone chooses one or the other. Why do moms feel threatened by these debates.

There is definitely truth in this humor.

So whether or not you have a child with special needs, realize that most moms are doing the best they can, don't be so quick to judge and let's just be nicer to each other. It will make the world a better place. Like my mom always taught me, if you don't have anything nice to say, keep your mouth shut.

Monday, March 14, 2011

Stop pooping in the sandbox

Well, that got your attention didn't it. :) Well, this blog isn't about Joshua, although it very well could have been a year ago when he would strip off his clothes in the backyard and run around naked and sometimes do his business. I've disinfected the slide more often than I want to admit. I'm glad that phase is pretty much over for Joshua, cute and endearing at the age of 3 & 4 not so much at 5 & 6.

Back to the sandbox...It's not Joshua who is doing his business in the sandbox it's stupid outdoor cats that do NOT belong to me. I love cats, I really do. I have owned 4 cats but only one remains. I just hate and despise outdoor cats. Just because you love your cat doesn't mean that every neighbor around you loves your cat. I'm not sure why people think it is okay to have outdoor cats that roam in other people's yards.

I'm not perfect. I know I know that's shocking to hear, but I'm not just ask Matt. I am forever forgetting to cover the sandbox which leads to annoying outdoor cats that think I've left them one gigantic litter box which means we are dumping and replacing sand constantly. I try to remember to cover the box but life gets crazy and I just forget. We replace the sand and I'm really good about covering the box for a few weeks and then laziness sets in.

I'm guessing I will not be getting a lot of RSVP's to future playdates at my house after I publish this post.

Friday, March 11, 2011

What's for lunch?

When someone asks you what did you have for lunch I'm sure that is a pretty easy question for most people. For me today, I grabbed a sandwich on the way home. If I ask Emily, she'll tell you cheeseburger, french fries, KETCHUP (mostly ketchup) and chocolate milk.

Now onto Joshua- He gets in the car every afternoon in carpool. I use this 10 minute ride on the way home to interrogate...errr...I mean talk to him. I ask him this simple question What did you eat for lunch today. Not because I really care what he eats. I let him buy his lunch every day because he likes it. Saves me time from making the same boring turkey sandwich every day for it just to come home uneaten. So now, he can just eat or not eat their food. Costs me the same but saves me time.

So back to the question...Joshua, What did you have for lunch today?

It never fails, the answer has always been the same since day one. I don't know. What do you mean I don't know. How do you not know what you ate for lunch. This little back and forth goes on for a few minutes and I finally give up the answer question part of our ride home. If he was ever captured as a hostage he would be very reliable and trustworthy, he'll keep all your government secrets. He'd never give up any intel. I promise.

So it's half way through the year and I have no idea what he has ever eaten at school. NOw i know he eats because I interrogate....err...I mean talk to his teachers every once in awhile and they assure me that he is not sitting in the corner wasting away from starvation.

Thursday, March 10, 2011

my diva

Okay, my parents are in town and me and my mom have been doing a LOT of shopping. Seriously, I haven't shopped this much since Christmas. Emily is going to be 4 in a few weeks so my mom bought her some presents to celebrate while she is here. She bought her a beautiful Easter dress. It is spectacular. And of course a matching hat, shoes and purse. She also got her a polly pocket toy. Emily has been playing with that thing for 2 hours and is in heaven. Besides changing her clothes 100 x a day she loves changing her dolls clothes so I knew she was ready for Polly Pocket. :)

Well, we got a tax refund recently and let me share something with you but it's our secret okay.  I spent $300.00 on clothes for Emily yesterday. Shh....don't tell Matt. Luckily he takes no interest in my blog and never reads it so I know it is safe here. *eye rolling*
I went insane shopping. I had so much fun. This girl is set for clothes (well she'll still need actual play clothes from target, you know the $3-$4 crap you don't care if they get dirty.

I spent $80 at Kohls. $80 at Children's Place, $52 at Payless, $70 at Penney's. I've justified it saying these are part of her birthday presents. You know how those justifications work, right. :)

I think the craziest thing I bought this girl was 4, yes I said 4 pairs of shoes. White sandals, floral sandals, pink dressy flats, and a new pair of dora tennis shoes. Not to mention the white dress shoes mom bought for Easter. I told you I went crazy. This is the first time in years that I bought her stuff that wasn't Target play wear. She is going to be stylin'. I know I shouldn't encourage her but when I was a kid I loved dressing my dolls and now I have my very own Doll to dress. ;)

I think I love buying her clothes because I know they will fit and be cute. Unlike shopping for myself. I did buy myself a new top yesterday but shopping in my department was just boring and depressing. So I ventured back to the girls department. I think Emily may be safe from the "glass child" syndrome. Of course she keeps asking me to play Polly Pockets with her and well, sorry honey, mommy is busy right now...blogging about how great of a mom I am to you. Yes, I know the irony of this is not lost on me.  But people, it's barely 9am and I haven't even woken up yet.

Now you may be wondering about poor Joshua what did I get him. Well I got him a hex bug from Target. They are really cool if you haven't seen them before. They provide hours of entertainment for my boy.|1287991011&ref=sr_bx_1_1&x=0&y=0

I also bought him a 2 inch memory foam mattress to go on top of his futon. Now that he is growing he should have a better bed and he doesn't want a regular bed because he likes that he can have a "couch" in his room when he has friends over.

Clothes, did he get clothes. Well Mom bought him his easter suit and 2 new pair of shorts. That's it. That's all he needs. Wondering why? Well he is still in a size 4. He has been in a size for at least a year and a half. It's crazy. So he has a dresser full of clothes he can still wear. So again, I justified Emily's expenditures because I didn't need to buy Joshua clothes so I could spend that money on Emily.

Monday, March 7, 2011


I haven't posted in awhile and I am sitting here thinking about witty things to talk about. But life is pretty mundane right now. I had to put a lock on Emily's closet because I got tired of her changing clothes 300 x a day. She declared she wanted clothes for her birthday instead of toys. She's 4 not 14 in case you were wondering.

Joshua starts back to school tomorrow and my stomach is in knots over this. I am ready to send him back to school. This past week he's been a handful. On the other hand, I wish he didn't have to go so I could keep him at home and protect him from all the hurt and hate in the world. One bubble to go please. :)

I've been reading a lot more articles and blogs on autism lately. Sometimes they are easy to read and humorous and other times downright painful. I wear my emotions on my sleeve which is probably not the best thing for Joshua. He doesn't need a mom who starts bawling at the first sight of injustice against him. I need to toughen up but it's so hard.

I've watched a video the other day about Glass Children. If you don't know what that is it refers to the typical siblings of special needs kids. It was  a real eye opener for me and I need to make sure I take care of Emily as well as Joshua. Here's the video. It's worth the watch even if you don't have special needs kids. I try to pay attention to Emily and spend a lot of alone time with her. I do worry about how Joshua acts out against her sometimes. I'm sure it seems like we don't punish Joshua enough. Hopefully, one day she will understand. In the meantime, I just need to continually make her feel loved and special and know that she is just as important to us as Joshua. Of course, this would be a lot easier to do if she wasn't a girl who acted like a teenager. Oh the talking back, and attitude, and arguments. Sometimes, she is more difficult than Joshua. Not sure why I ever taught her to talk.

Hopefully, I will do enough for my kids not to scar them too badly. Maybe instead of a college fund, we should start a therapy fund...hmmm....need to call our financial advisor and discuss. :P